Advertise
With Us 
ChronicPainSite.com Foundation, Inc Personal Homepage
Please, if you have not Donated lately we need your help.
Click here to find out how YOU can help
  Advertise
With Us 
 
  FAQ FAQ   Forum Search   Register Register  Login Login

New FP Group.. LIFE WITH CHRONIC PAIN
How you can get more control of your health and life.
Click Here
To Our FB page      
      
Login
Register
---------
ChronicPainSite.com Foundation, Inc
RULES
Navigation
Main Page
Forum Home
About Us
Site Information
Our Advisors
Articles Home
Faces of Pain
Recipe Section
No Pain Pain Scale No Pain


FAQ
Member Control Panel
Login
Register
Walking Conversion Chart

DC's Stories

CP Man Stories
 
Donate

tkay's Story

 Post Reply Post Reply Page  123 64>
Author
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Topic: tkay's Story
    Posted: Dec/28/2009 at 10:46am
Hi.
I found your site today when I was on Facebook.
 
I am relieved to find your forum. I have fibromyalgia along with a few other things I have been living with for a very long time. I was diagnosed with fibro a couple years ago. I had symptoms for quite a few years before finally, getting the courage to change doctors. It was soon after changing doctors that he finally determined what was going on.
 
What was very interesting in the doctor change is that he also found I had gall bladder problems and it was taken care of asap. I have some liver enzyme elevations remaining due to medication and being overweight.
 
I needed this forum for a long time but never took the time to find somewhere. So I am glad I stubbled on this place when I did!
 
Not sure what else to say. 
Back to Top
Tinkerbell View Drop Down
Member
Member
Avatar

Joined: Jul/02/2008
Location: Hamilton, On
Posts: 4478
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tinkerbell Quote  Post ReplyReply Direct Link To This Post Posted: Dec/28/2009 at 11:12am
Tkay I'm very happy that you found our site, you'll get a lot of caring people here willing to support you in whatever you need, and however we can.

It never amazes me to hear how getting another Dr's opinion is so crucial at times, and you're a prime example.  I'm so glad to hear that you've received a diagnosis, albeit not a happy one, but at least you have a "name" for it, plus found other issues as well that were obviously over looked.

I'm assuming that your medications are working for you?  Just curious as to what you're taking, may help others here with fibro as well?
Are you able to work etc?  See, we find things for you to talk about, lol!  Also, please join us Tkay over at the Townhall Place, we go there to chat about our day, or whatever, just to relax and no pain talk.

Glad to have you with us hon,

Take care,
Donna
L1/L2 protrusion with a piece migrating
L4/L5 small bulge
L5/S1 bone on bone, non-operable
DDD and osteoarthritis
2000 disc herniation L5-S1 had micro discectomy, failed. Right leg/foot numbness & sciatica. Permanent nerve damage in right leg/foot along with radiculopathy and neuropathic pain and Drop foot.
SI Joint & Facet Joint Injections with some relief.

NATIONAL SUICIDE HELPLINE 1-800-273-TALK (8255)
http://www.crisisclinic.org/
IN THE UK 0845790 90 90
http://www.samaritans.org/

For help for many things...
Canada: http://www.211Canada.ca/
U.S.: http://www.211.org/
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Dec/28/2009 at 11:31am
Hi tkay!!
 
I am also so happy that you found us, and I hope that we can help you.  As I told you, our members are very supportive.
 
Are the increase in liver enzymes related in any way to your gall bladder problems, and are they coming down back to normal levels since things were taken care of? 
 
I am also interested as Donna asked about what you are doing for your FM medication wise, or other alternative treatments.  I know of many people who have had some good success with Lyrica, and I take a small amount of it for nerve pain.  What types of problems have you had with the FM as they can be so wide ranging.
 
I am really glad that you found a Dr. who did diagnose you as it is so difficult to know that something is wrong but not have a name to put with it.
 
Again, I am glad that you are here.  In the articles section we have several pieces about FM that you may want to check out.  Best wishes, Stevie
 

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/28/2009 at 5:42pm
Hi Tinkerbell and Stevie.

I take 275 lyrica everyday, once in the a.m. and once at bedtime. I also take 300 effexor in the a.m. At one period Effexor was very effective alone without the lyrica. I started taking lyrica last spring. I am not sure of alternative treatments as in herbal and vitamin regieme. I have problems with allergies to medications and chemicals.

My liver enzymes were more elevated due to my gall bladder having stones. But even after surgery a few months later the liver enzymes were still elevated. Dr. stated it was due to my being overweight, I have fatty liver disease, and due to some of my medications. My taking medications for the fibro outweights the risk I suppose for permanent liver problems.

My symptoms of fibro: all over pain, worsening symptoms with weather change, fatigue, weariness, fogimindedness, "forgetfulness"(im thinking due to the fatigue),I sometimes can not say a word even though I know what it is that I want to say.

I was told by my rheumatologist sometimes people get both fibromyalgia and rheumatoid arthritis. I was also told by my family dr.(the dr. who diagnosed me with fibro) that sometimes people even get Sarcoidosis with fibro and rheum. arthritis. I also have lower back disc problems at L4 and L5! I also have bursitis in both hips. Rheumatoid arthritis in my hands, wrists, ankles, and toes.

I feel like I have an odd mix of things going on.

Edited by tkay - Dec/28/2009 at 5:45pm
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Dec/28/2009 at 6:09pm
Hi Kay,
 
Yes, you are on a good dose of Lyrica.  Do you think that it is helping you?  I do know that many people with FM do feel better on it, but it also is known to cause weight gain, and you are already fighting that.
 
No, you should never even think about alternative forms of supplements or herbal/vitamins without your Doctor's permission.  I was thinking more of things like acupuncture, massage, etc.
 
Yes, those of us with autoimmune diseases are probably prone to have more than one thing going on, and that is just my personal opinion.  I am also thinking that having RA, you are not being treated for it?  I know that a lot of the medications for RA are pretty tough to take.
 
Are you able to exercise at all?  Walk, swim?  I know that without my massages and exercise (I swim using a snorkel), I would be in much worse shape.
 
Please do go to our Article's Section, and look through all we have there.  Things on chronic pain and Alternative Therapies.  I hope that there will be something there for you, and I also can tell you that there will always be someone here to talk to and support you.  Hugs, Stevie

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/28/2009 at 6:31pm
The lyrica does help alot. There are time though that I have break through problems...I break through the dosage and have pain really bad.

I am being treated for RA. I use Humira injections twice a month. I go down hill without the injections. I also take celebrex.

Oh and to top things off...I have high blood pressure. I am having problems with that big time. I have no problem with my heart...had a stress test last year.

Exercise, since having RA in my feet I dont do alot. I would like to do more than I do. I am only able to make a slow trip around the block.

I had to ask my Rheum for a parking permit because there had been a time or two I would get into a store and wonder if I was going to make it back out to my car!

Slowly I am getting through the forums. All the articles are very helpful. I have read a lot so far. I intend to read further on also. :) Knowledge is power. I have found that once spending an hour on the computer reading through articles that they all become the same after a while with no new info. in them.
Back to Top
TKDmomOF3 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul/11/2008
Location: Jersey
Posts: 1355
Post Options Post Options   Thanks (0) Thanks(0)   Quote TKDmomOF3 Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 7:32am
Hi tkay!
I just wanted to say Hello.  I was reading your posts...wow you really have a lot on your plate.  I think sometimes that is the hardest thing for others to understand...when we start our days with pain, that has to be dealt with first.  The other things we accomplish each day can be done because we are fighters and have learned to manage and live with our pain, not fight against it.

You mention that you sometimes grasp for a word, you know the word, but it won't come out.  That and some forgetfulness can be attributed to medications.  It is a delicate balance; having enough meds to function well and yet being able to say the minimal side affects are something we can live with.  When I was taking Lyrica, a very small dose, I had the "forget a word syndrome"...and the bad part was I knew it.  I would try to say it and another word would pop out instead.  For me, the side effects got worse and I had to switch to Neurontin.  I don't have that problem any longer, well, no more than I would normally have being me.  I am not saying that is the answer for you. 

I hope you have as pain free day as possible.
Anna
Injured 9/06 herniated L5-S1,2/07 Micro-D;disk colapsed,Discogram 4/08**Surgery:360 fusion w/ hardware L5-S1 on 5/12/08** Had a SCS 7/2009, was great while it lasted, removed 4/2011, the lead moved. Tapered off pain meds 5/2011...8 months later the pain had gotten so high, I slowly went back on fentynal patch with norco for breakthrough. Out of work sinc 11/1/10.

"If you love life, don't waste time, for time is what life is made up of." -- Bruce Lee
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 8:42am
HI Anna.
At this point the forget the word thing is only on a minimual basis and when it happens my family members are patient with me about it.
 
I am not sure what my family's reaction is to my having fibro, rheum, and other stuff that is going on. I have been dealing with this for so long they know I struggle. 
 
I have three young adult "children" who all live at home, they are 21, 19, 19.
 
I had delt with Trigeminal neuralgia at the start of my fibro journey, and took neurontin for a couple years. It is interesting how medication can affect one so. I remember any time my dose of neurontin was increased I felt like a zombie for days! I would walk around with a fog that was even worse than the fibro fog!
 
With the lyrica I really dont have too bad of a side effect other than feeling a bit "high" when increasing dosages, the dr. is aware of this, fortunately I am only feeling that way a short while as my body adjusts to the increase.
 
The thing that bothers is wondering how much pain to deal with. Do I take as much medication as I can so I am not in pain? How much pain is too much pain? I tend to take meds right as a feel the slightest pain at this point before the pain gets away from me.
For me, I have had times where I have been in so much pain and not have medications, I am so glad to have the lyrica, effexor, and the celebrex for the arthritis. And really I am thankful for the humira injections!
 
One of the things that drew me here was the fact I was worried about my insurance benefits and the high deductible that I have. I needed some place to go to hear how others deal with the fact that they cant pay out of pocket for meds even though they have insurance coverage, and are low-middle income. I have yet to find any group or org. to help if this is to become a problem(which I thought it would be a problem Jan 1).
 
I found out yesterday that my insurance deductible is going to be 1300.00, my employer is going to match that by way of a Health Saving Debit card. I can use it for my meds on January 1. It sure pays to read all the fine print on things!
 
 
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 9:08am
Hi tkay--
 
I also have a very high deductible and also pay an incredible amount each month for private insurance.  I know that Lyrica is very expensive.  Have your checked with Pfizer about their assistance program? 
 
Another thing.  Please go to the Forum called "Medical Information and More".  When you get into that section, one of our members, Imchunk, did a great job of putting together links to the drug companies.  I believe it is called "Medication Assistance".  So scroll down through that section and see if this will be of some help to you.
 
You raised a very good question about how much pain is too much.  It depends upon the individual.  I have learned to manage my pain with as little medication as possible and life style changes.  But there are times (as recently as the past several weeks), that I have had a huge flare and have had to take the medications so that I could be as comfortable as possible and sleep.  We all have to learn about our bodies, and know when enough pain is enough.  I think it sounds as if you are doing a good job with managing your pain.
 
I do hope that some of this information will help you.  Stevie

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 11:22am
Stevie,
 
About Pharm. co. helping out. I have found that they help those who are low income, I am not low income but low middle income. They base the help on income, we make too much money, even though we cant afford the medication.
 
I was able to get help with my copay from the Humira company. So I only pay $5.00 instead of 75.00.
 
I have done alot of research on this in the last week or so.
 
To update a bit. My H looked into his insurance benefits for the new year. His co. didnt not make an announcement that would have put my pharm. fears to rest. They are matching one deductible of 1300.00, by way of a health saving program. So that 1300.00 deductible money they are matching will be used up in a matter of however long it takes to ring up the meds. sheesh.
 
I try never to let my pain get out of control. Once it starts I take something right away.
I take celebrex daily, I notice if I miss it though that I am uncomfortable, but I dont like it to increase. Someone mentioned to me not to chase my pain with meds. Meaning dont let the pain get so out of control that I am having to calm it down in the middle of a flareup. So I do the best I can.
 
I guess the biggest thing I do for myself is pacing. Pacing myself in activities and knowing that if I push myself too far I will pay for it later. I dont like the payment of pushing myself too far.
 
There has been so much to adjust to this year. I feel sometimes like I am living someone else's life but then it dawns on me it is mine! I used to be a very very active busy lady. I used to do so many things I dont do now. Sometimes it bothers me and other times I am in the mode of I dont care.
 
It seems like the Mode of I dont care happens alot in my life.
Mostly it has to do with stuff concerning around the house. Dishes pile up, laundry piles up, relying on the kids for things(but then they dont do it), all the stuff that mattered to me at one time, I dont care!
 
It is so interesting how a chronic illness and pull one back and make them look at life and what is so most important.
 
 
Back to Top
kermitsbride View Drop Down
Member
Member
Avatar

Joined: Dec/29/2009
Location: West Yorkshire
Posts: 31
Post Options Post Options   Thanks (0) Thanks(0)   Quote kermitsbride Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 11:58am
i can so totally see where your coming from with the 'i don't care' attitude, unfortunately we have to prioritise and pacing is a good idea, i was told to plan ahead, so if i'm doing something i think will exhaust me i have to plan rest days after, its hard when i'm working and nothing seems to be working with me at the mo but it does help sometimes,

I have been refered to chronic pain rehabilitation therapy which my first apt is 14th jan, this helps us look at pain in a different way and to hopefully try and control it without so much meds, will keep you all infomed when i go xx
Back to Top
Spicey View Drop Down
Senior Member
Senior Member
Avatar
I Donated to CPS 2014

Joined: Jun/30/2008
Location: England, UK
Posts: 4568
Post Options Post Options   Thanks (1) Thanks(1)   Quote Spicey Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 3:55pm
Hi Tkay,

I don't suffer from FM myself and being in a different country it's hard to know what to suggest to help with costs of medications, etc.  But if there is anything that you think I may be able to help with, then please let me know.  I hope and pray that you find some relief soon.

Big hugs, SpiceyHug
42 yrs old, chronic pain for 21 years.
Decompression/stabilisation surgery with Dynesys Apr'04, revision with PLIF fusion Oct'08, SCS installed Apr'10. Injured neck in a stair fall in July '09.
Failed Back Surgery Sydrome & Fibromyalgia diagnosed 2011.
2014 diagnosed with Adenomyosis and Endometriosis. Surgery to thermalize the endometriosis in May '15
Also suffer from non-epileptic seizures brought on by pain.
Nevro high frequency SCS unit fitted in Feb 2016
Also suffer from anxiety & depression.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 4:34pm
HI Spicey. Thanks for coming by to listening and be supportive. I will keep you in mind!

Kermitsbride, yes thinking ahead is also a great addition to pacing. I do that too. I have to! Especially if I want to be involved in things other than recliner sitting as an activity!

Stevie, I appreciate the info! thanks! I am sure that I will gain and glean much from being here.
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 6:47pm
Hey tkay!!
 
I get so upset when people who are not in a certain "class" cannot get help.  We have a real failure in our country where health care is concerned, and I pray that some sort of health care reform is passed that will help all of us, but I have my doubts.  Hoping that I am wrong.
 
Does your Dr. have samples of some of the meds for you?  I always ask my Dr. if she has any Lyrica as it is the most expensive of the meds that I take, also the Lidoderm patches.
 
You are so right that we cannot and should not chase the pain away.  Once it gets a grip on us it is hard to break.  I am a real believer in needing to break the pain cycle.  So, if it does get out of control, do what we need to do (always with safety) to get out of it.
 
I am also a convert in pacing myself.  I was probably one of the most "go for it" people you would have ever known, and kept going like that despite a few lumbar fusions.  The past few years the cervical and thoracic problems have forced me to end the life that I once knew.
 
We learn to do what we have to do to stay as focused and to still love life as much as we can.  It is not always fun and can be horribly frustrating.  But it is our way of coping.  And to those people who do not understand, than so be it.
 
I am very glad that you found us, and hope to get to know you a lot better.  Oh, and we will "glean" even more having you here with us.  Stevie
 
 

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 8:37pm
I wasn't sure if I would be helpful or not by being here.

Believe me I know about the unfairness of certain classes getting help while others fall through the cracks. Remember I work for a food pantry. My boss even made suggestions and finally gave up because all of them were income based.

Our furnace went out when it started getting really cold out in October. We went a week without heat until the new furance came in. We had emergency money we could dip into but it took several days before it was in our hands. I even called the local govt asking about grants the city may have gotten for home energy improvements. Was told they never got one and to call United Way. well that isnt going to help me since they do alot of income based stuff.

Even when i have infant twins with health problems we could not get any aide for formula. We had paid 90.00 for formula for one child that didnt even last two weeks! I dread the thought when I think of it.

I really truly have my doubts about the health care system that will come to pass. Everyone will have insurance but at what price?

sorry I am in sort of a rant here about insurance and such. We found out we will no longer have eye glass insurance H's company discontinued that coverage. My step dad was angry when he heard this, he knows I have a lot of health problems.
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 8:53pm
Tammie,
 
You are most definitely helpful here.
 
You shed so much light on what it is like to be in your situation and not to have medications or even formula for your baby.  Not to mention living in a very northern state with no heat.  I lived in Wisconsin for several years.  I know what cold is. 
 
One thing about being here is that we all know about rants and needing to vent.
 
Gets hard on the family and close friends after awhile.  Many of us, even with close family members need to give them a break.  Anyhow, you are a real plus here.  Stevie

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 9:16pm
thanks Stevie.

My twins are 19 now! I am sooo glad that they are. Those were hard hard times. A lot of dr. visits, many illnesses, alot of medications!

What is hard for me is my family members now really understanding about fibromyalgia or RA. I sometimes wonder what they think. I guess I could ask.

My husband has made snide comments about the medications I take. I wont tell you how that conversation went because I was very blunt.
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Dec/29/2009 at 9:35pm
Tammie.
 
I am not sure how many people understand the family dynamics that really play a role in anyone with a chronic illness or a chronic pain issue.
 
This includes cancer and it's aftermath.  When a spouse pulls through , things are never the same.  For some it means better times, but for too many things are never the same and worse.
 
The same goes for an ongoing illness and /or pain.  The toll is taken in one form or another.  The price is paid.  Relationships are made stronger or broken apart, and yes, as you said, things are said that are very hurtful and can't be taken back.
 
At the end of the day, we do what we need to do, and the people in our lives get it or they don't.  We just have to keep ourselves motivated and move in a positive direction.  So, we come here or any other place we can to get help and comfort.  Stevie

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
Rocken Roni View Drop Down
Charter - Member
Charter - Member
Avatar
I Donated to CPS

Joined: Jul/09/2008
Location: Alberta Canada
Posts: 11506
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocken Roni Quote  Post ReplyReply Direct Link To This Post Posted: Dec/30/2009 at 1:57am
tkay, You sure have been on one long journey.
I want to wish you all the luck in finding everything
you need and I hope your good days out weigh your bad days.

Please donate to help Chronicpainsite.com continue to help others.

Until one has felt the Love of an animal,
a part of their Soul remains Unawakened.

Unknown

1st injured Feb, 1997. Was told it was "Soft Tissue" and sent back to work - no X-rays
Late 1997 attended 1st Rehab Program to strengthen back. Mid 98 PCP took me off work. Tried going back to work over the next couple years, mostly off work due to pain.
June 2000, met with OS for first time. Did MRI , damage was L5-S1 totally blown out. Surgery done Jan, 2001.
Another Rehab program late 2001, attempted to go back to work early 2002. Slipped on water, fell flat on back screw fusion broke.
Went to 3rd Rehab program summer 2002.
Oct 2003 - 2nd Surgery, due to broken screw, had to operate from the front.
No improvement. Attended 4th Rehab program in 2004, at time It was decided NO work.
March 2006, had 3rd Surgery, this time fusion and instrumentation from Si to L3.
June 2008 Surgeon finally admitted I had Failed Back Surgery.
August 2009 WCB Finally put me on Long Term Disability
Back to Top
kermitsbride View Drop Down
Member
Member
Avatar

Joined: Dec/29/2009
Location: West Yorkshire
Posts: 31
Post Options Post Options   Thanks (0) Thanks(0)   Quote kermitsbride Quote  Post ReplyReply Direct Link To This Post Posted: Dec/30/2009 at 5:45am
tkay

You are an inspiration hun, you are a true fighter and have already inspired me to get out of the pit i seem to be rotting in at the moment, i know picking myself up isn't gonna stop the pain but a cheery disposition will certainly help and i have just a few words from you to thank

xx
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/30/2009 at 11:23am
Stevie, motivation...yep that is the key. staying that way. I have been finding a motitation to do some reading, popcorn reading I call it, light fun, touching stuff. I have been reading a lot of Richard Paul Evans books. He has one called the Christmas List that had me thinking the other day. Do we have a book section? Maybe I could put a summary there about it.
 
Hi Ronnie, Thank you. Things are coming around. Sometimes things work out with me hardly working on things and other things come a bit harder, but really it all works out in the end.
 
Kermitsbride, Thank you. I understand how hard it is. I havent been who I am all the time, growth, change, deciding to go at things differently and accepting what is going on has helped me a great deal. I have found that having people around me who care and support to be the thing that has gotten me this far.
 
I hope everyone has a great New Years Celebration...however you celebrate...we are probably going to be home, lounging around the tv with out laptops enjoying each other.
Back to Top
Rocken Roni View Drop Down
Charter - Member
Charter - Member
Avatar
I Donated to CPS

Joined: Jul/09/2008
Location: Alberta Canada
Posts: 11506
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocken Roni Quote  Post ReplyReply Direct Link To This Post Posted: Dec/30/2009 at 11:41am
tkay,
We have a book section in the IIWIIS section. You can go to it by clicking on the two revolving balls at the top of the page. It's a book club where you read different books post summarys, y not.
You do have to give a password again, but give it a try.
Roni

Please donate to help Chronicpainsite.com continue to help others.

Until one has felt the Love of an animal,
a part of their Soul remains Unawakened.

Unknown

1st injured Feb, 1997. Was told it was "Soft Tissue" and sent back to work - no X-rays
Late 1997 attended 1st Rehab Program to strengthen back. Mid 98 PCP took me off work. Tried going back to work over the next couple years, mostly off work due to pain.
June 2000, met with OS for first time. Did MRI , damage was L5-S1 totally blown out. Surgery done Jan, 2001.
Another Rehab program late 2001, attempted to go back to work early 2002. Slipped on water, fell flat on back screw fusion broke.
Went to 3rd Rehab program summer 2002.
Oct 2003 - 2nd Surgery, due to broken screw, had to operate from the front.
No improvement. Attended 4th Rehab program in 2004, at time It was decided NO work.
March 2006, had 3rd Surgery, this time fusion and instrumentation from Si to L3.
June 2008 Surgeon finally admitted I had Failed Back Surgery.
August 2009 WCB Finally put me on Long Term Disability
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/30/2009 at 7:04pm
Roni, I will have to get over to the IIWIS section. I have registered there and I peeked around a bit but that is all.

I went to the dr. this morning. My blood pressure continues to be high. Dr. A is going to monitor it a bit longer. He had the report about my lung x-rays, he read it to me, no signs of pulmonary disorder or disease. yay! I am so relieved. I am to take my blood pressure several times a day. (I have yet to figure out how this will happen during my day as I am working all day)

Back to Top
Tinkerbell View Drop Down
Member
Member
Avatar

Joined: Jul/02/2008
Location: Hamilton, On
Posts: 4478
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tinkerbell Quote  Post ReplyReply Direct Link To This Post Posted: Dec/30/2009 at 7:46pm
Tammie that's wonderful news in regards to your lung xrays, what a relief that must have been for you.  I do know that you can get those small portable blood pressure cuffs and monitors from a drug store, well at least here in Canada anyway.  My inlaws have well 3 I think! lol.  Perhaps you're meaning trying to find the time or place while at work?  Do you get breaks, lunch where you can take it, I don't think it takes more then a few minutes if I remember correctly?

I do hope they can find the cause or that it lowers, do take care of you though ok?

Hugs
Donna
L1/L2 protrusion with a piece migrating
L4/L5 small bulge
L5/S1 bone on bone, non-operable
DDD and osteoarthritis
2000 disc herniation L5-S1 had micro discectomy, failed. Right leg/foot numbness & sciatica. Permanent nerve damage in right leg/foot along with radiculopathy and neuropathic pain and Drop foot.
SI Joint & Facet Joint Injections with some relief.

NATIONAL SUICIDE HELPLINE 1-800-273-TALK (8255)
http://www.crisisclinic.org/
IN THE UK 0845790 90 90
http://www.samaritans.org/

For help for many things...
Canada: http://www.211Canada.ca/
U.S.: http://www.211.org/
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/30/2009 at 8:24pm
I have two of those blood pressure thingies.
The thing is, I know I am suppose to do the readings, and did for a while really well, but after a while I kept forgetting to do them. so I have nothing for the dr. to see.

Back to Top
kermitsbride View Drop Down
Member
Member
Avatar

Joined: Dec/29/2009
Location: West Yorkshire
Posts: 31
Post Options Post Options   Thanks (0) Thanks(0)   Quote kermitsbride Quote  Post ReplyReply Direct Link To This Post Posted: Dec/31/2009 at 2:31am
when i need to remember things (especially meds on time), i set a reminde on my mobile phone, could you do anything like that for the blood pressure monitoring ??

xx
Back to Top
TKDmomOF3 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul/11/2008
Location: Jersey
Posts: 1355
Post Options Post Options   Thanks (0) Thanks(0)   Quote TKDmomOF3 Quote  Post ReplyReply Direct Link To This Post Posted: Dec/31/2009 at 8:49am

Hi!

I also set alarm reminder on my cell phone.  It really helps me with my meds.  I also use the calander feature to put my appointments in. 
 
My oldest son has "white coat syndrome"  anytime he has to go to a daoctor, other than the pediatrician (he will be 21 next month and has yet to switch doctors!)  It almost kept him from getting a job last summer with the police force.  Luckily, they recognized what was going on and had him relax for a while, then re-tested him. 
 
One of the hardest things for me is the balance between medications, pain, work and family.  When i was just about ready to return to work, after nearly 1 1/2 years of being home, my PM gave me the following advice...(in a very kind way)  It is my choice to decide if I needed to take a day off because of pain, how much to deal with and if I was going to handle the pain (with his help) or suffer through.  No one else can make those decisions for me.
At this point in time I was tettering between fighting the meds, and lifestyle changes that would make it easier for me to function as fully as possible (for me).  I have returned to work, I take my meds and let him know when they are not working, and I "let stuff go" or have learned to rely on others when I need to.    Up until that point I didn't think I had a choice. I just continued to try to be my "old self"  Well, that person is but a memory and the "New Me" is here to stay.  I still have pain everyday, I still have days where I need to use heat/ice, I have days when working is difficult. 
The whole point I'm trying to make is that many of us fight the meds because of the stigma that comes with it.  These are things we need to make it through the day.  It  makes it even more difficult when those around us have strong opinions about the meds we need, or the time we HAVE to HAVE to rest/recoop before or after an activity. 
 
It has to be frustrating to deal with insurance issues on top of trying to handle the load you been given daily. 
I wish you all the best in the new year! 
Injured 9/06 herniated L5-S1,2/07 Micro-D;disk colapsed,Discogram 4/08**Surgery:360 fusion w/ hardware L5-S1 on 5/12/08** Had a SCS 7/2009, was great while it lasted, removed 4/2011, the lead moved. Tapered off pain meds 5/2011...8 months later the pain had gotten so high, I slowly went back on fentynal patch with norco for breakthrough. Out of work sinc 11/1/10.

"If you love life, don't waste time, for time is what life is made up of." -- Bruce Lee
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Dec/31/2009 at 9:40am
HI Kermitsbride and TKDmom.

I already use my cell phone for remembering my meds so I dont see a problem with having to set it a few more times a day for the blood pressure readings. I wasnt thinking about that last night when I posted. I have an appt book feature on my phone too so I keep track of appts that way.

I'm a fighter it seems in more than one way.

I am fighting to get a life that allows me to function so I can be as active as I am able.

But I am also a fighter of getting a new life. Basically because the unknown frightens me. Plus one who doesnt want to give up the old life that I like!

I am finding though, that slowly life is gonna change as far as what I like to do whether or not I want it to. So why fight it?

I have been fighting meds, fighting my dr., I am stubborn and eventually come around to my dr.s ideas, but not without kicking and throwing a fit just as a 3 year old!

I figured this out last night when I was in the resource area reading about pain. Reading about the way to use the meds. I felt stupid because I would take the celebrex and think okay this is going to be "it". Ha. Yes it helps to a degree but, remembering my other stuff helps too. That I can use B C Or D along with A, and since I have asked it is okay, I can use them together. Im dense I suppose.

Bare with me folks this is all new to me...using as much as I need.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/05/2010 at 10:39am
HI you all.
 
Sorry I have been MIA for a few days.
 
I have been fighting a cold/ear infection. It has been interesting. H also has the same thing going on. I told him that I also had the same thing. He went to the dr. last monday and I went on last wed. I told him he gave it to me, he says I gave it to him. My kids are rolling on the floor with laughter over this convo. Neither one of us will admit that we are the cause of our own.
 
I have beern dealing with my blood pressure going through the roof. Sunday I woke up with a bp that was so high I wondered if I was goign to explode. 180/90. I took my meds. monitored it and nearly headed to the er, when it was 189/90. I decided okay today is the day of quiet, very little work, and no talking to my oldest son(he can get my bp going faster than anything). If finally did go down a few hours later.
 
I was left wondering on monday what to do if this is happening more often than not. So I called the dr.
 
He put me on a diuretic. Hopefully this is something that will do the trick.
 
My Husband keeps telling me not to worry. I am not in worrying to make myself ill but I do worry and wonder when my bp is going to come down.
 
I am in very little pain, so I doubt it is the pain. I am ill so maybe that is part of it. But even when I am not ill my bp has been higher than it should, not ever as high (that I know of) as it got on sunday.
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jan/05/2010 at 11:07am
Hey Tammie Kay,
 
Sorry to hear that you are not feeling well, and hope that you will be better very soon.
 
High blood pressure is oftentimes genetic, and despite being normal weight, exercising and limiting salt, it can still be high.  I am assuming that your Dr. added the diuretic along with another class of medication that you were on?   It is not uncommon for some people to have to be treated with three different classes of meds for hypertension to get it under control.
 
I do hope that this diuretic will do the job for you, and you were really wise to monitor it so closely and to call your Doctor.  Yes, pain does increase Bp and so those of us who are prone to hypertension are at even greater risk.  Of course, worrying and having family members who can push the "wrong" buttons does NOT help!!!
 
Anyhow, glad that you brought this up.  It is a very good thing for all of us to remember----keep tabs on our Bp.
 
Feel betterThumbs%20Up Stevie

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
imchunks View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul/19/2008
Location: Blackwell, OK
Posts: 1686
Post Options Post Options   Thanks (0) Thanks(0)   Quote imchunks Quote  Post ReplyReply Direct Link To This Post Posted: Jan/05/2010 at 11:39am
Tammy Kay,

I know how scared you get when your blood pressure spikes like that.  Yes, pain does cause blood pressure to spike, but there are a lot of other things that make mine spike also.  Stress, not getting enough sleep, and being overweight are some of the things that cause mine to go up. 

I am glad that you are in contact with your doctor about your blood pressure.  Stevie is right about many of us needing several different classes of blood pressure medications.  I take three (Verapamil, Metoprolol and a diuretic) and can keep mine in the range of 150/70 most of the time.  A few weeks ago during a really stressful time and increased pain levels, my BP spiked to 193/100.  My doctor increased the Metoprolol and it came back down fairly quickly.  I think the key for me is to monitor my blood pressure daily and when it gets out of my normal range to contact my doctor, just as you did.  Sometimes just small changes in our medications, pain levels, etc. will change our BP up and/or down.

I am glad that you are on top of your BP and I hope that you get to feeling better soon. 

Take care,
Judy

LUMBAR: lumbar herniated disc almost all non-surgical treatments available have been tried. (5) laminectomies on lumbar spine 1982-2001, Failed fusion of L4 L5 in April, 2005; Spinal Cord Stimulator (SCS) March,2007

CERVICAL: Cervical herniated disc, Anterior cervical discectomy & fusion (ACDF C5-7)November, 2007

OTHER ISSUES: DDD, Polyneuropathy, Occipital Neuralgia, Rotator Cuff Tendinitis, Carpal Tunnel, High Blood Pressure, Hardening of the Arteries.

NERVE DAMAGE: Bilateral Peroneal, Tibial and Sural Nerves of lower legs, feet and ankles (damage caused by previous back surgeries).
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/05/2010 at 12:01pm
HI.
 
Stevie, thanks for reminding me that HBP can genetic. That is what I am dealing with. I am overweight, I do watch the salt intake, and caffiene, and I do take my meds. I do exercise and I am active as my body will allow me too.
 
My dr. is working to adjust my meds. I am on three bp lowering meds already and then he added the diuretic.
 
It sure doesnt help to have the family tell me not to worry or freak out. I am just that type of person who does worry, I am getting better though. It doesnt help to have a young adult who just seems to know everything and thinks he is correct about everything also!
 
btw, I am taking Benicar, Metoprolol, and Norvasc in addition to the diuretic. Hopefully we will see a change soon. My dr. is very good about keeping on top of things.
 
I have a few more hours of work then I go home to do what ever I want. :) cant wait!
Back to Top
Spicey View Drop Down
Senior Member
Senior Member
Avatar
I Donated to CPS 2014

Joined: Jun/30/2008
Location: England, UK
Posts: 4568
Post Options Post Options   Thanks (0) Thanks(0)   Quote Spicey Quote  Post ReplyReply Direct Link To This Post Posted: Jan/05/2010 at 4:22pm
Hi TK, I'm glad that you got to speak to your Dr about this. Of course you are going to worry about it, it's human nature. As it's human nature to let your elder children wind you up!  It's really hard to take a step back sometimes, yes, teenagers always think they know better, they are always right, they can be inconsiderate and thoughtless to point of being downright hurtful, but I think the important thing to remember is that it's a symptom of being a teenager and it's not necessarily a personal vandetta against the people who love them (at least that's what I tell myself when dealing with my boyfriend's teenage offspring!)

I really hope the addition of a diruetic to your regime will help to bring that bp down. Meanwhile, do you ever do any kind of relaxation exercises or meditation? It may help with the anxiety side of things.

Take care and I hope you get better soon from your cold and ear infection. Big hugs! Spicey
42 yrs old, chronic pain for 21 years.
Decompression/stabilisation surgery with Dynesys Apr'04, revision with PLIF fusion Oct'08, SCS installed Apr'10. Injured neck in a stair fall in July '09.
Failed Back Surgery Sydrome & Fibromyalgia diagnosed 2011.
2014 diagnosed with Adenomyosis and Endometriosis. Surgery to thermalize the endometriosis in May '15
Also suffer from non-epileptic seizures brought on by pain.
Nevro high frequency SCS unit fitted in Feb 2016
Also suffer from anxiety & depression.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/05/2010 at 7:12pm
Spicey...oh those teenagers...I wont go there. My boss asked me today after I had told her about my blood pressure incident what my boys did to crank me up like that. I said they didnt do a thing...I woke up in that condition.

I sure know it is their job and mission in life to be brain dead til they are 21 or 22. My daughter is going to celebrate her 22nd on thursday.

I am sure hoping that the diuretic worka also. Im sitting here wishing I didnt have to have any meds and that this blood pressure problem would just resolve.

I like relaxing and being quiet. I have learned the last few years to do this without fighting it. I thought it would be terrible but it isnt.

My mom had high blood pressure. I am not surprised that I have it. The good thing is I dont have my moms addictive personality when it comes to cigarette smoking and caffiene, she had problems with both. I have never smoked, it was always secondary smoking I delt with.

I am proud to say both my boys have kicked the cigarette smoking habit. Both because their significant others werent going to put up with it. They do not like cigarette smoking. I dont either. They are not allowed to smoke in our home or in our cars.

Spicey, the terrible thing about this ear infection thing is that I am going to need another course of medication to heal my ears. I am currently taking a antibotics that is a 7 day course.

Back to Top
Spicey View Drop Down
Senior Member
Senior Member
Avatar
I Donated to CPS 2014

Joined: Jun/30/2008
Location: England, UK
Posts: 4568
Post Options Post Options   Thanks (0) Thanks(0)   Quote Spicey Quote  Post ReplyReply Direct Link To This Post Posted: Jan/06/2010 at 9:57am
Yuk, I am so pleased that I have never had an ear infection because I suffer from nausea so easily and I get dizzy or travel sick very easily. I think it would be awful and I pray it never happens!  Fingers crossed those antibiotics work for you.  Do you eat bio yoghurt or anything after a course to help get the good bacteria back into your system?
42 yrs old, chronic pain for 21 years.
Decompression/stabilisation surgery with Dynesys Apr'04, revision with PLIF fusion Oct'08, SCS installed Apr'10. Injured neck in a stair fall in July '09.
Failed Back Surgery Sydrome & Fibromyalgia diagnosed 2011.
2014 diagnosed with Adenomyosis and Endometriosis. Surgery to thermalize the endometriosis in May '15
Also suffer from non-epileptic seizures brought on by pain.
Nevro high frequency SCS unit fitted in Feb 2016
Also suffer from anxiety & depression.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/06/2010 at 7:04pm
Spicey,
I never had an ear infection until I moved to Michigan. I have found over the years I have alot of environmental allergies. But it being winter it is more than likely I also had a sinus infection with the ear infection.

I ran into this site the other day. I love this particular site because of information that is there. The article is called the spoon theory.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

It explains so well what I go through with the fibro, ra, and other things that go on concurrently with the other two.


Edited by tkay - Jan/06/2010 at 7:34pm
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jan/06/2010 at 7:19pm
Tammy,
 
Honey, I can't get into the site.  Could just be me.  Can you try to edit your post?  Go up to Post Options and the hit Edit Post.  Sorry if I have already told you someting that you already know.  See, everyone here knows that Stevie is completely computer illiterate, so if I can find one thing I know I try to pass it onEmbarrassed  Anyhow, try to redo the link, and it it does not work, I am sure that our SYSOP John will help you.  Thanks Tammy.

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/06/2010 at 7:35pm
Stevie,
I didnt realize that copying and pasteing wasnt going to work here. sorry about that.

So I reposted the link by pressing the little globe button and entering the link there.

Tammie Kay



Edited by tkay - Jan/06/2010 at 7:36pm
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jan/06/2010 at 7:44pm
It is perfect Tammie Kay.  Thank you.  I want to have some time to really read and absorb it.
 
Have you read the "Letter to Normals"?  It is in the Forum "Medical Information and More" here.  Posted by Judy (Imchunks).  Let me know what you think.
 
Thank you !!!!  Stevie

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/06/2010 at 7:53pm
I have read that letter before and have used it for my friends and those I am close to.

I like this one better though.
Back to Top
Spicey View Drop Down
Senior Member
Senior Member
Avatar
I Donated to CPS 2014

Joined: Jun/30/2008
Location: England, UK
Posts: 4568
Post Options Post Options   Thanks (0) Thanks(0)   Quote Spicey Quote  Post ReplyReply Direct Link To This Post Posted: Jan/07/2010 at 10:23am
Tkay, I love that link. I'm blown away by it actually - what a great way to try and explain how we have to live our lives, and it's applicable to so many conditions.  Thank you so much for sharing it.

Stevie - should be put this link in a new sticky alongside the Letter to Normals?
42 yrs old, chronic pain for 21 years.
Decompression/stabilisation surgery with Dynesys Apr'04, revision with PLIF fusion Oct'08, SCS installed Apr'10. Injured neck in a stair fall in July '09.
Failed Back Surgery Sydrome & Fibromyalgia diagnosed 2011.
2014 diagnosed with Adenomyosis and Endometriosis. Surgery to thermalize the endometriosis in May '15
Also suffer from non-epileptic seizures brought on by pain.
Nevro high frequency SCS unit fitted in Feb 2016
Also suffer from anxiety & depression.
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jan/07/2010 at 10:25am
Originally posted by Spicey Spicey wrote:

Tkay, I love that link. I'm blown away by it actually - what a great way to try and explain how we have to live our lives, and it's applicable to so many conditions.  Thank you so much for sharing it.

Stevie - should be put this link in a new sticky alongside the Letter to Normals?
 
I think that is a great idea SpiceyThumbs%20Up

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/07/2010 at 3:52pm
Spicey and Stevie.
One would think when having chronic pain or in my case Autoimmune disorder that people would just be accepting of us and what happens.
I feel sometimes I spend a lot of energy educating people, and it is the last thing I really want to do.

Anyway, when I find a resource that is so well written as the spoon theory then I use it. I don't have a problem with borrowing an idea to educate, takes pressure of me.

Today...I woke up with my blood pressure at 140/100. I both numbers are high ones but the lower number is the one that seems to be way high this week. For what reason I don't know. maybe the wind blew the wrong direction? I ended up staying home from work to bring it down, and it did come down in a couple hours, but then it was 110/68, I felt like a limp noodle.

I ended up sleeping during that whole time. I am not sure what to do when it gets as high as it did and then have it come down like it did and feel the way I did.

I am doing everything that I am told to in order to get stabilized.
Back to Top
Stevie View Drop Down
Admin Group
Admin Group
Avatar
I Donated to CPS

Joined: Jun/01/2008
Location: Arizona
Posts: 26934
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jan/07/2010 at 4:57pm
Tammy Kay,
 
Hopefully you will adjust to the diuretic soon.  Are you taking it in the morning?  One of the biggest problems with being on many different meds for your Bp is orthostatic hypotension.  When you stand up, the blood pressure can drop dramatically and make you dizzy and woozy and some people pass out.  If possible try to get readings when you are lying down, sitting up and standing.  Actually it is hard to do that yourself, so it is something that your doctor's assistant can do for you.
 
Also be really careful about going from lying in bed to standing.  So, first sit up and see if you feel OK.  Then stand slowly and stay there for a minute with something to hold onto until you are sure that you are stable.
 
I know that you have a Rheumatologist and that you are on Lyrica, Celebrex, Effexor and Humira for your RA.  Do you have all of your scripts filled at the same pharmacy?  I ask, because I would want someone to make sure that none of these can interact with your BP meds.
 
As always, when in doubt about something as important as regulating your Bp, please do call your Dr. with any questions.  There are NO dumb questions when you are feeling the way you are, and you are doing a great job of monitoring your Bp to stay in control, but these huge swings are a bit disconcerting.  Wondering if some of the times of the meds need to be altered?  It sounds as if the meds suddenly start working all at once, and then may wear off too quickly.  My husband has to take his Bp meds morning and night to stay in control around the clock.
 
Hugs, Stevie

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/07/2010 at 5:40pm
Stevie.
I take the diuretic in the morning, along with benicar. I have a med. at noon I take, and another in the evening.

My dr. has record of all my meds. I took all of them in and had him record the names and the dosages. He is very careful with me. He knows that I was overmedicated one time and that sent me to a psychiatric hospital for 5 days.(depression and anxiety meds)

What is hard for me when going to the dr. is that when he tells me new information I dont always hear everything he says. I like go into a different world.

I was wondering too if they wear off to quickly. I thought of that this afternoon when I took my bp and it was high again. sheesh. at that time I was sitting at my desk doing data entry.



Back to Top
kermitsbride View Drop Down
Member
Member
Avatar

Joined: Dec/29/2009
Location: West Yorkshire
Posts: 31
Post Options Post Options   Thanks (0) Thanks(0)   Quote kermitsbride Quote  Post ReplyReply Direct Link To This Post Posted: Jan/08/2010 at 4:08am
Hi Tammy

I use the spoon theory all the time, i sent it to my boss and he really appreciated the explanation and now understands it better, and my friend with ME and i always use it to show how we feel that day, ie lots of spoons today ir no spoons today. For Christmas she bought me an Italian link bracelet and one of the links says '1 more soon' i thought it was ace

It is hard when you have an 'invisible' illness to get others to understand but i find this particular story explains it perfectly

xx
Back to Top
Tinkerbell View Drop Down
Member
Member
Avatar

Joined: Jul/02/2008
Location: Hamilton, On
Posts: 4478
Post Options Post Options   Thanks (0) Thanks(0)   Quote Tinkerbell Quote  Post ReplyReply Direct Link To This Post Posted: Jan/08/2010 at 5:30am
tkay just a suggestion here in regards to hearing all of the overwhelming information we're told at each visit and try to remember?  Majority of time my husband takes me as I can't drive to the hospital, and even if he does come?  I ALWAYS bring my digital voice recorder, just a small slim device, but honestly it's a god send!  Sometimes he doesn't hear everything or remember it too!  We're a great pair lol!
Seriously though hun if you're having difficulties with this, this surely helps a lot, and the software that comes with it, you can take the recordings and upload them onto your computer so you can hear it better and go back and listen, I couldn't be without mine.

Just a note here, to make sure that you tell any Dr's that you're recording re memory, I didn't know this as one Dr was kind of uppity about it even though I had told his assistant I was recording and why, well she didn't tell him.  As he said, if I was going to record you, I legally have to tell you before hand, so just to advise you.  Any of my other Dr's haven't cared at all, but there's always one, also, I don't believe they can stop you from recording as well, so don't let that scare you off!

Something to consider anyway, so wanted to just put it out there for you!

Take care sweetie
Donna
L1/L2 protrusion with a piece migrating
L4/L5 small bulge
L5/S1 bone on bone, non-operable
DDD and osteoarthritis
2000 disc herniation L5-S1 had micro discectomy, failed. Right leg/foot numbness & sciatica. Permanent nerve damage in right leg/foot along with radiculopathy and neuropathic pain and Drop foot.
SI Joint & Facet Joint Injections with some relief.

NATIONAL SUICIDE HELPLINE 1-800-273-TALK (8255)
http://www.crisisclinic.org/
IN THE UK 0845790 90 90
http://www.samaritans.org/

For help for many things...
Canada: http://www.211Canada.ca/
U.S.: http://www.211.org/
Back to Top
imchunks View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul/19/2008
Location: Blackwell, OK
Posts: 1686
Post Options Post Options   Thanks (0) Thanks(0)   Quote imchunks Quote  Post ReplyReply Direct Link To This Post Posted: Jan/08/2010 at 6:09am
tkay,

I was wondering how long you have been on the BP medications.  My doctor said that sometimes she changes the meds after a patient has been on the meds a long time or they seem to quit working too quickly.  Maybe it is time to talk with your doctor about changing to another kind of BP med.

It took me a long time to find the right combination of medications to control my BP.  I still have problems with the systolic portion of my blood pressure, but we are working on it. 

I am glad that you are being your own advocate and watching not only your BP, but also how you are feeling at different BP levels.  This will help your doctor determine how to help you get the right BP medications, the right timing of taking BP medications and better regulation of your blood pressure.  The more information we can give our doctors, the better they can help us.

Take care,
Judy

LUMBAR: lumbar herniated disc almost all non-surgical treatments available have been tried. (5) laminectomies on lumbar spine 1982-2001, Failed fusion of L4 L5 in April, 2005; Spinal Cord Stimulator (SCS) March,2007

CERVICAL: Cervical herniated disc, Anterior cervical discectomy & fusion (ACDF C5-7)November, 2007

OTHER ISSUES: DDD, Polyneuropathy, Occipital Neuralgia, Rotator Cuff Tendinitis, Carpal Tunnel, High Blood Pressure, Hardening of the Arteries.

NERVE DAMAGE: Bilateral Peroneal, Tibial and Sural Nerves of lower legs, feet and ankles (damage caused by previous back surgeries).
Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/10/2010 at 5:59pm
Kermitsbride, that is cool how you use the spoon theory. I will be doing the same. Maybe carry around a few plastic spoons. Your bracelets sounds nice, it is cute she found a spoon with the engraving on it.

HI Tinkerbell. Now I sure didnt think of a message recorder! I used one of those in college to take notes from.

Imchunks, I am going to mention this to him. He did add in the diuretic, it has helped. I have had readings of 118/68 the lowest readings I have ever recorded or have known myself to have! wow.

I have some other things I plan to ask him also.

A friend of mine(who is a therapist and works with people who have invisible illnesses) suggested I get a sleep study for sleep apnea, he felt that my high readings I take in the mornings might be something to look into. Along with the high blood pressure readings, there are a few other things that point toward sleep apnea.

I will ask about that to see what my dr. thinks. He is good about answering my questions that I have. He knows that I take care of myself as best as I can. Even more so if I am educated by him about stuff.

I am finding this winter that the cold really bothers me a lot more than i once thought. It actually exhausts me to be out in the cold. I havent heard of anyone having this problem.

I have a problem if I do get too cold or hot that I get hives. I am wondering if anyone else has this problem and what you do. I take claritin(the non decongestant one.)


Back to Top
tkay View Drop Down
CPS Support
CPS Support
Avatar
I Donated to CPS 2013-2016

Joined: Dec/28/2009
Location: Michigan
Posts: 7883
Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jan/26/2010 at 2:40pm
Hi everyone.
I am sorry it has taken me a few days to get back to you all after travelling.

I am well. My symptoms weren't a problem while I was gone.

I am trying to get aclimated back to life here in the States. I know that I was only gone a week, but really it feels like more than that.

Just being able to converse without having to struggle for words is great! I don't speak much Spanish so I was at a disadvantage. I am thinking of taking some lessons. Smiles and hugs sure go a long way to work with children. I try my best with the phrases I do know and that is taken okay. :)

Back to Top
 Post Reply Post Reply Page  123 64>

Forum Jump Forum Permissions View Drop Down


Go To Top of Page
Angry CPS Members list of 65 worst things people say to us about Chronic Pain Angry
Big smilePositive Pointers for Those In Pain from our ChronicPainSite membersBig smile

 



This site complies with the HONcode standard for trustworthy health information: - verify here. This website is certified by Health On the Net Foundation. Click to verify.
  Terms of Use  -  Privacy Statement  -  Site Information
Dedicated to providing guidance in the comprehension and management of chronic pain.
We believe that the well-informed person has the ability to take charge of their pain
 rather than having pain take charge of them.
At this time funding is provided by ChronicPainSite.com Foundation, Inc.
A 501(c)(3) nonprofit corporation
Also by public and private donations

Our site does display banner/link exchanges in the form of unrestricted grant funding
CPS maintains a clear separation between editorial content and sponsorship/advertising. Advertisers messages are clearly identified,
 and advertisers links lead to sites that are not owned or controlled by CPS.
 CPS reserves the right to remove advertisers that do not comply with our standard


This site had been accessed a combined total of 16,341,279 times in 2011 to 2012
This site has been accessed 10,880,421 times in 2013
This site has been accessed 11,533,431 times in 2014
This site has been accessed 13,338,417 times in 2015
This site has been accessed 15,241,338 times in 2016

This site has been accessed 8,731,404 times in 2017