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What I would like you to know about Fibromyalgia

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tkay View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Topic: What I would like you to know about Fibromyalgia
    Posted: Apr/08/2011 at 8:06pm

To my Family, What I would like you to know about Fibromyalgia. Love, Your wife, daughter, sister, mom, neice, aunt, BFF, Tammie

From:

http://www.fibroandfatigue.com/how-to-discuss-with-your-family.html

 How To Discuss With Your Family

Some people dealing with Fibromyalgia and Chronic Fatigue Syndrome are fortunate to have loving, supportive families. Others aren’t so lucky.  Almost everyone suffering from these conditions has dealt with skeptics who have told them: “It’s all in your head,”  “You’re just lazy,” “All you do is complain,” “Just deal with it and get on with your life.”

Even doctors and many others in the medical community can be skeptical, unsupportive and even scorn people with this debilitating condition. Here are suggestions to deal with unsupportive medical professionals or family members who may not fully understand what it’s like to live with this condition:

  • Fibromyalgia is not “all in your head.”

    These symptoms are not psychological, they are physiological. In 1987, the American Medical Association recognized Fibromyalgia as a true physical illness and major cause of disability.  Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) also known as Chronic Fatigue Syndrome (CFS) has also been recognized by the Center for Disease Control (CDC).

  • It strikes life-long athletes as viciously as couch potatoes. 

    Probably the single biggest misconception is that these conditions are more likely to affect sedentary people. On the contrary, Fibromyalgia and Chronic Fatigue Syndrome tend to affect type-A overachievers in a disproportionate ratio. People with this condition want to participate in physical activities, but can’t. They don’t want to give up their jobs, miss out on their kids’ activities and stop living their lives. They’d give almost anything to be able to participate in the daily activities we all take for granted.

  • People with Fibromyalgia aren’t just tired.

    All too often, sufferers live in a state of physical exhaustion. This isn’t something one good-night’s sleep can fix.

  • Those with Chronic Fatigue struggle with unrelenting fatigue that is so debilitating that sleeping/resting 20 hours day is often common and necessary.
  • You may laugh at the clumsiness and forgetfulness that affects so many with Fibromyalgia, but when it’s your body that you can’t control and your brain that doesn’t work, it isn’t funny. It’s terrifying.
  • There are good days and bad days. 

    The problem is that most people affected by these conditions don’t have any control over them. They have to cherish the good days, which are often the only things that keep them going.

  • Be caring and supportiveThe only thing worse than having a disease is being misunderstood or blamed by those you trust such as family, friends and medical professionals. Love and compassion go a long, long way. More than you might imagine.
  • There is nothing someone suffering from Fibromyalgia wants more than to get his or her life back.Sufferers are desperate to be the kind of mother, wife, father or friend that you want them to be.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jerri255 Quote  Post ReplyReply Direct Link To This Post Posted: Sep/14/2012 at 3:25pm
TKay, this was amazing to read, thank you so much... it really touched me on a deep level for I feel so alone sometimes... I have support but I just don't talk about it for I am afraid of all these things you just mentioned. I don't want to be looked as a complainer, lazy etc....  I am a postive person by nature and sometimes when I am not so bad it can work but when I am in pain, I have anger on top of it because I wouldn't want to bother someone or bring them down mentioning my pain... I have mentioned it in the past and it seems that there is no interests , all I get is a yeah... I get it , people don't know what to say, I can understand that but they could ask me how I am doing I would think....
 
Great post!!!!!
If you think you can't , your're right. Henry Ford
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Sep/14/2012 at 8:45pm
Hi Jerri.
I did not write this article but reposted it from another website.

I have emailed it to those closest to me so they can read it and know what is going on with me.

I believe it is very healthy to be able to talk to others about the pain we are in, because otherwise you are creating another problem, not having authentic and intimate relationships with other people. these are the people you should be able to talk about your pain to. They wont see it as complaining.

You will not be looked at as complaining here on the forums. Please do not compare pain either. Your worst is your worst that you have experienced.

We all have good days and bad days.

I hope you are able to find ways to get rid of your anger.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jerri255 Quote  Post ReplyReply Direct Link To This Post Posted: Sep/27/2012 at 7:07am
TKay,
Thank you for your reply... I would send this to all my friends if they had interest in computers for sure! Maybe I will print it out!  I think I should have used the word frustration other than anger for I can understand both sides , I like when you said that my friends wouldn't see it as complaining.. and that I can complain here... I am just coming out of a flareup so I am feeling really appreciative today and a lot more positive, back to being me!
I am going to try and talk about this to my friends and honestly I don't think I will count on a certain response because I don't want to be let down by my own expectations...take it as it is and work on it right?
If you think you can't , your're right. Henry Ford
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Sep/27/2012 at 7:13am
Hi Jerri,

I don't have FM, but wanted to let you know that you can come here and vent anytime.  We all have CP of one kind or another and we understand and get it when friends and family don't.

I hope you will have some very good days ahead and not have another bad flare for a long time.  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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Sep/27/2012 at 12:48pm
Hi Jerri,
 
I'm so glad you're coming out of a flare and feeling a bit better. Feel free to vent away, we all do it. We also all have cp so we also get it. You always feel better when you can get what's bothering you off of your chest so look at venting as therapy.
 
Bailey
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Merlin Quote  Post ReplyReply Direct Link To This Post Posted: Sep/27/2012 at 6:52pm
Hi Jerri - first - I would like to welcome you to our site - all of us have pain - this is a given - and we never judge anyone
 
Everyone is so wonderfully supportive
 
I have learned that anger can be creative - it can give us the motivation to continue -
 
But when it is turn inward - it can become depression
 
With all the things that happen to us when we are in pain - it is very depressing at times - and isolating and we are often in the way of other people wanting us to get better - or something
 
I am sure you will find something here to help you - maybe from the members or reading our literature
 
But we are here to hear you
 
All the best Jerri
 
Merlin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Sep/29/2012 at 6:01pm
Hi Jerri.
I am in the middle of a flare up.
My friends are good about figuring this out without asking now.
The pastors wife last Sunday asked me if my outside and insides were matching in how I was feeling health wise. I said no it is not happening.
I was glad for her concern and compassion.

I have found that I need to vent and express my emotions. This helps me to be compassionate to myself.



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Post Options Post Options   Thanks (0) Thanks(0)   Quote wolfalohalani Quote  Post ReplyReply Direct Link To This Post Posted: Nov/16/2012 at 1:44pm
Hi Tammie -

Sorry you're flaring, I felt like they were at me with the rubber hoses yesterday, but better today.  I took the train from Portland to Seattle and back for work earlier in the week, and wow did that set me off!  Whoof.  

Am I the only one whose body reacts to vibration by pitching a hissy fit?  Every time I travel I have at least a day afterward where I want to curl up in a ball and whine.  The plane is worst, train is second, car is third, but all hurt.  

The only time recently I've traveled where I didn't feel like total hamburger afterwards was the time Susan and I pitched a queen sized air mattress in the back of the Explorer and I laid on that when I wasn't driving.  There was lots of rolling, gentle bouncing, but not any real vibrating.  And I was fine afterwards.  

If vibration is a substantial problem for us when we travel, then it seems like if there was something you could take with you to put between you and the seat that might help.  Anybody know of anything like that I could try?

Thanks,

wolfalohalani
Ruptured L4-5 10/91 - diskectomy 2/92. Fibro started 4/92. Cervical myelopathy 12/07 - laminectomy C4-7 3/08. B12 peripheral neuropathy 6/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Nov/16/2012 at 2:43pm
I don't know if I have problems with vibration, but I do have awful problems with sitting on a plane cramped in one position for hours.  I just had to make 2 cross country trips in a little over a week.  Killers.  I don't know of any way short of what you did with the bed in the back of the SUV---now that sounds like my idea of traveling in style for those of us with CPBig smile

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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Merlin Quote  Post ReplyReply Direct Link To This Post Posted: Nov/16/2012 at 5:22pm
Hey Wolfie - that sounds like hell
 
I think my brain cells would let me know if a hissy fit was likely to happen with vibrations - these things rattle my windows
 
Short hops over Bass Strait in a plane are okay for me - I don't know about a long flight - I think I would have to get up and walk around the plane a bit if I could - sitting for a long time is not a good idea
 
Trains are fine - I use them from time to time - I like to go into the city now and again - and unless  there are people jammed in there like the proverbial sardines - I can handle that
 
We have trams in our city - they take so long to get through heavy traffic I would rather walk -
 
Buses - nonono - they swerve - they start they stop they swerve - people standing up look as if they are puppets with someone moving the set around - I hate buses - I could get a bus from here to the station but I would rather walk - I hate buses - (I already said that but it's still true) once the bus I was on served and stopped in the same second and all the people standing up fell over
 
I would perfer not to use a bus
 
And road rage - everyone goes crazy - taxi drivers are used to this but still have to swerve or brake suddenly -  but  worse than that was a couple of weeks ago when my driver had faulty suspension and/or wheel alignment - that really cause a pain flare - and school was getting out and the traffic was heavy - not the best time to be on the road
 
Yup - I guess I could honestly say my body has a hissy fit in transport - but my social life needs company from time to time
 
I wish I had a bicycle
 
Merlin
 
Ah - how does it feel for your body when you are driving?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote wolfalohalani Quote  Post ReplyReply Direct Link To This Post Posted: Nov/17/2012 at 4:01pm
Hi Merlin - 

It's kind of like getting stung a little bit of all over, but especially the places that contact the seat or bear weight - so the backs of my legs and feet were pretty annoyed.  Give it a day and some treatment and I'm a lot better.  

You wouldn't expect spraying hot water on something that burns would help, but it does.  Between that, rubbing some oil in, and lying down and concentrating on my breathing, I dropped off after maybe half an hour and the next day my legs were stiff and achy instead of burning and hurting.  

It depends really on the road surface more than whether I'm driving or riding in the car.  Susan and I have driven down to Eugene and back - a three-hour drive over pretty smooth road, and I've been fine.  Driving up to Seattle is a problem though because some bits are really rough, and my legs hurt a lot afterwards.  I've driven, and not - driving is maybe a little worse, but not by much.

I'm more curious than anything else - if it really is the vibration that does me in, I would think that making that less would help.  I have a trip planned next month to Denver that requires a couple hours flight - let me see what kind of shock absorbing thing I can come up with and we'll see whether it helps. If nothing else it should be fun seeing what the flight attendants say about it.

wolfalohalani

Ruptured L4-5 10/91 - diskectomy 2/92. Fibro started 4/92. Cervical myelopathy 12/07 - laminectomy C4-7 3/08. B12 peripheral neuropathy 6/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Nov/17/2012 at 4:12pm
Wolf,

I have a soft neck pillow that I travel with.  It's in the shape of a square, when zipped closed.  You can open it up and it is then more rectangular and use it to sit on it on the plane.  I have had to do this on flights that had seats so hard I couldn't bear it.  The other nice thing about it is that it has a piece of the fabric that is sort of a handle, and I can slip it over my rolling totes handle.  I have even put a water bottle inside it while zipped and some snacks or lunch.  I'll try to post a picture of it next week.  Unfortunately, it is just about worn out, and I can't find another one like it.  I have put a lot of miles on that thing and use it in my relax the back chair at home and in bed when propped up on pillows.  But it does absorb some of the vibrations of the plane.  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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Merlin Quote  Post ReplyReply Direct Link To This Post Posted: Nov/17/2012 at 9:28pm
That gadget sounds great Stevie
 
My aunt gave me something to put behind my back in the car and when I flew home from Tasmania the last time - new it was pretty small - it's a cushion that is pretty flat when rolled out into three compartments - and my aunt blew it up just a little bit - and that bit of air in this flat cushion was behind me all the time on the flight and when in the holding pattern - the holding pattern over the storm took longer than the flight home
 
Cause of the storm all the outgoing flights were delayed and the plane I was in stopped out in the tarmac - and we all ran through the rain - me too - I can still run - and of course I got wet - and it took forever for the shuttle to get to my drop-off point
 
I think I was lucky - my clothes were damp - and that might have kept my back cold after the bumpy landing - and then I had the cushion behind me in the shuttle - and by the time I got home - I was aching and tired - but I think that cushion was a God-send - I had better post a pic of that too
 
Merlin
 
Hey yes - seats in planes are so hard and they have this shape - okay - I am pretty much regular size - but how does a big man feel jammed in one of them?
 
Or are they worse in short domestic flights?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Nov/18/2012 at 4:28pm
Anytime I am in a seat that has me confined to one position really does a number on my body.
I am glad that my husband and dogs like to stop alot, or I would be a pretzle by the time I get to my destination.
 
I have a trip coming up on late wednesday afternoon. I might be able to leave a bit earlier. who knows.
I am not looking forward to travelling however!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote wolfalohalani Quote  Post ReplyReply Direct Link To This Post Posted: Nov/20/2012 at 11:24am
So, is it really just getting up more often?  I shifted around a lot in my seat but I didn't get up that much - the rocking and my balance make an unpredictable combination.  

I'll think good thoughts for your trip Tammie.  Are you going to see family for Thanksgiving?

wolfalohalani
Ruptured L4-5 10/91 - diskectomy 2/92. Fibro started 4/92. Cervical myelopathy 12/07 - laminectomy C4-7 3/08. B12 peripheral neuropathy 6/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Nov/20/2012 at 12:21pm
For me it's about being stuck in one position, and on long flights that's a tough one.  They really don't like people being out of their seats these days except to use the rest room and return.

I do fly more often then I would like, and if I can't get upgraded to first class (using my frequent flyer miles), which helps as far as more room goes, I will either call and request a bulk head seat or wait until the day of the flight and ask if I can be moved there due to spinal issues.  They are generally accommodating.  There is more leg room in the bulk head seats,  and I can stretch my legs.

I also wear loose fitting/stretchy clothing and bring my pillow.  And most importantly---pray for on time departures.  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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Nov/20/2012 at 8:32pm
For me getting out of the car and stretching helps.
I find it very difficult to sit still in the car, I shift around a lot. I lay the seat back as needed too.
I take a pillow to put behind my head and then a couple to put under my arms.

We will be staying with the in laws and visiting both our families they live in the same town.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Mar/09/2013 at 7:45pm
This is something I found that I felt was a good one about Fibro. I did not write it however.



As a Fibromyalgia sufferer I do not want your sympathy, I just want you to understand who I am because I may forget.

Yesterday I may have been limping, today I may be skipping, tomorrow I may be having a sofa day.

Yesterday I may have been on top of the world, today I may want to stay in doors, tomorrow I may not be able to get out of bed.

Although my pain is all over, yesterday my leg may have been hurting more than my arm, today its my head, tomorrow it may be my back.

Yesterday I was able to make a three course meal, today its a frozen meal, tomorrow its Jam and bread.

Yesterday I climbed a mountain, today I may manage a mile , tomorrow I may manage a smile.

Yesterday I may have been engaging in great conversation, today I may forget my words, tomorrow I may have forgotten we spoke.

It's not easy living with Fibromyalgia, even harder when others do not understand you!!


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Mar/09/2013 at 8:31pm
Great find Tammie, thanks for sharing it. I understand this very well, I hope others will.
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Mar/10/2013 at 9:11am
It really spoke about what Fibromyalics face each day.

I have people in my circle that tell me pain/illness should be an exception not the rule. I wished that they could experience a week of what Chronic pain/illness sufferers do. Then maybe they would understand that pain/illness is a rule for those of us who deal with it chronically, being well is an exception.



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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tigs_Cub Quote  Post ReplyReply Direct Link To This Post Posted: Mar/27/2013 at 9:15pm
Thankyou so much for this interesting information I have had so many ppl tell me the exact same thing that it is all in my head and i am faking or just plain lazy and I have cried myself to sleep cause no one believed me so I thank you for this info i have mailed to every one i know who called me a fake LOLBig smile
Tigs_Cub

Surgery 20 some odd years ago on L5 S1 Chronic lower back pain, scar tissue on spinal cord and nerves, Fibromyalgia, scoliosis , disc disease and degeneration, 3 bulging discs, Sciatica , Depression, sleep disorder, Arthritis , IBS, IC Migraines, Dislocated A-C Joint
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocken Roni Quote  Post ReplyReply Direct Link To This Post Posted: Mar/28/2013 at 4:01am
Tigs_Cub,
Remember these ppl are not educated in chronic pain and don't realize what they are talking about. I am one of the lucky ones who never had any one call me a fake unless it was or is behind my back. Try not to get to offensive as just b/c we don't look hurt on the outside they think there is nothing wrong with, or our pain isn't as bad as it really is. I know it's hard not to get frustrated but try to remember they most likely educated enough in chronic pain.
Anytime you need to get things off your chest, come here and vent as you know that we all understand and are here to listen to any thing you have to say. Remember you are number 1.

Roni


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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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Posted: Oct/28/2017 at 9:43pm
Hi, sorry to but in.
I noticed it said immune system disfunction.
So does crohns and CFS run hand in hand?
Anybody know?

Seems like it took an awful long time to dx my CFS after my crohns dx
It just wasn't enough inflamation,in there minds, for so much fatigue.

Sorry about my username,I hadn't figured out how yet duh.
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Bailey View Drop Down
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Joined: Oct/22/2010
Location: Canada
Posts: 10349
Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Oct/29/2017 at 4:17am
Hello guest, I’m so glad to see you using the site. To give yourself a user name and set up a profile, go to the Memeber Control Panel on the left and click on Profile. Then you can enter as much or little information about yourself also you like.

Hopefully someone who knows about immune diseases will chime in here for you. I’m sorry but I have no experience with fibro or cfs.
DDD C3-C6 with multiple osteophytes causing both moderate foraminal and canal stenosis and flattening and impinging on the spinal cord
Cervical Facet arthritis
Chronic Pain Syndrome
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