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Hi,I'm denny

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Denny View Drop Down
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Joined: Oct/16/2017
Location: California
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Topic: Hi,I'm denny
    Posted: Nov/17/2017 at 9:29pm

I guess this is as good a place as any.
I'm a 63yr old man living in California.
A wife and a wounded warrior,our son live with me.

At 17 I had noted depression,at 19 I was addmited with a bleed in my ilium. There 13 days while they poked and prodded to find I had crohns,they call it regional iliitus. Not regional.
While there I contracted staff,and as I later found out-CFS. That cut the ground out from under me. Knocked me clean out of the game
Worse part,nobody could tell me what was wrong. Apparently crohns would not account for it,so I guess I lost it for a few dacades I was not nice.
Luckily my wife stuck it out,life saver.
Maybe not so lucky for her.
People would balk at this 6' 260lb man glowing with health...was sick.

Coming out of all that,life is a bit better now,then fibro hits the scene.
Oh well, now we add tremors,interior and exterior,internal being the worse. Enlarged blood cells and now wasting syndrom,that all started after I took topamax...WARNING,THIS DRUG IS BBAD.

Seems like a nice place.
Thanks for reading
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Bailey View Drop Down
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Joined: Oct/22/2010
Location: Canada
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bailey Quote  Post ReplyReply Direct Link To This Post Posted: Nov/18/2017 at 3:47am
Hi Denny,

I’m sorry you’ve been living with pain for so long. Thanks for telling us a little about yourself. There is a lot of info in the forums and also in the Articles Section on the left. I’m glad you found the site, it is a really nice place and the people care and support each other. We understand what it’s like to be in pain but look “normal” to those around us.

If you have any specific questions, ask away and someone will try and help. I look forward to seeing you around the forums and hope you have a good day
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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Denny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Posted: Nov/18/2017 at 12:14pm
Originally posted by Denny Denny wrote:


I guess this is as good a place as any.
I'm a 63yr old man living in California.
A wife and a wounded warrior,our son,live with me.

At 17 I had noted depression,at 19 I was addmited with a bleed in my ilium. There 13 days while they poked and prodded to find I had crohns,they call it regional iliitus. Not regional.
While there I contracted staff,and as I later found out-CFS. That cut the ground out from under me. Knocked me clean out of the game
Worse part,nobody could tell me what was wrong. Apparently crohns would not account for it,so I guess I lost it for a few dacades I was not nice.
Luckily my wife stuck it out,life saver.
Maybe not so lucky for her.
People would balk at this 6' 260lb man glowing with health...was sick.

Coming out of all that,life is a bit better now,then fibro hits the scene.
Oh well, now we add tremors,interior and exterior,internal being the worse. Enlarged blood cells and now wasting syndrom,that all started after I took topamax...WARNING,THIS DRUG IS BBAD.

Seems like a nice place.
Thanks for reading
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Denny View Drop Down
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Posts: 25
Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Posted: Nov/19/2017 at 5:18pm
What the...???

Thanks Bailey!
Good to meet you.
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Stevie View Drop Down
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Location: Arizona
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Nov/19/2017 at 9:25pm
Chrons disease is a horrible illness. What meds are you now on Denny?

Also, what are you able to tolerate for the FM and CFS? I’m confused about the tremors—-could you be a little more specific? Is this in anyway relevant to the diagnosed illnesses or is this something new?

Please keep us posted and we will help you in any way we can

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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Denny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Posted: Nov/20/2017 at 10:35am
Hi Stevie,
I was never a classic case of any of those things.
I stopped my crohns meds-mercaptopurine-in order to promote healing;skin cancer on my ear and a botched surgery. That was a fun 3 years.
So there's no inflammation in my bowel right now,just tons of symptoms. Their still looking.
That's what makes it so confusing.


I take morphine,gabapinton,prozac(I'm on burn out on that one),provigil,trazadone.
I didn't mention my back and knee,they are kinda a minor problem with everything else.

I'm fairly active on a periodic basis.
Can still walk,lift,even run short distances.
The tremors are familiar I think. Nobody I've met has them this bad though.
It's as if my body just decided to waste away.
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Denny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Posted: Nov/25/2017 at 2:29pm
My other pain forum isn't very talkitive either.
I was hoping
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Stevie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Nov/27/2017 at 12:22pm
Denny——

Your symptoms are not what we ordinarily see here and so most people won’t know how to respond appropriately—-I’m sorry you haven’t gotten more responses.

My suggestion would be to seek the guidance of a Functional Heath Specialist. I personally know people who have been through hell and back like you and have gotten no where with typical Western medicine. They are finding many GI problems such as SIBO (small intestinal bowel overgrowth) and yeast infections in the gut. Many conditions can be treated with major dietary changes.

Google Mark Hyman. He’s a real pioneer in this field and his website may provide you with some new information

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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Jeff View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jeff Quote  Post ReplyReply Direct Link To This Post Posted: Nov/28/2017 at 1:00am
Can you describe these tremors in detail?
Ankylosing spondylitis & osteoporosis -> compression fractures -> facet & ligamentum flavum hypertrophy-> stenosis -> spinal cord & nerve root compression -> cervical myelopathy & radiculopathy -> bruise & deformation of my spinal cord -> incomplete spinal cord injury -> postlaminectomy syndrome of cervical region. Cervical laminectomy & fusion decompressed my cord but I now have severe chronic pain. Pain meds = Oxycontin, Percocet, Lyrica, Soma, Cymbalta, Voltaren Gel, & Ketamine pain cream. 11 surgeries including 5 orthopedic & 1 neurosurgery.

Please donate to help Chronicpainsite.com continue to help others.
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Denny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Posted: Nov/30/2017 at 7:13pm
Oh wow,that may be difficult.
On the outside,depending on how stressful I perceive the environment to be,are hand snakes to full body shaking/twitching.
Inside it feels like anything from an electric razor to a a change saw to an industrial engine pumping away inside.
It can get pretty nasty.
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Denny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Posted: Dec/02/2017 at 12:28pm
Why the intrest in the tremors?
Parkinson's has been ruled out,but only by one Neuro doc.
I don't trust that guy.
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Edie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Edie Quote  Post ReplyReply Direct Link To This Post Posted: Dec/08/2017 at 11:53pm

Hi Denny

Sorry to hear all the difficulties you’ve had throughout your whole life. I am a bit confused about what bothered you before, and what is still bothering you now. I hope you can explain a little more, to see if we can come up with some helpful ideas.

For what I see, Crohn’s  have been something that has bothered you a lot, though it  seems they never found out much about it. You mention that there is no inflammation, but that you have lots of symptoms. Could you talk a little more about those symptoms? Are you seeing a gastroenterologist about this? I am not sure why you stopped the Mercaptopurine.  Possibly it was not helping, or maybe you just felt that you didn’t need it anymore?

As for Gabapenting, this medicine  usually works well for nerve pain, so I take it you use it for your fibro.  I hope it is helping, if not, please go back to your doctor. He could increase the dose, or maybe come up with a different medication like Lyirica which usually works very well for this.

I don’t know why you were on Topomax. This medicine is used for various conditions, but normally is used to control seizures in epilepsy. I am sorry it didn’t work well for you. I hope your doctor will find something else to replace it. I use this medication for migraine headaches, but I have some pretty bad side effects from it, and because of that, I only use it very once in a while.

You do mention some tremors, it seems to me that is something to consider. If Parkinsons has been ruled out, what does your neurologist say about them? Something has to be causing that, it would be a good idea to have that checked out.

Are you still having problems with the enlarge cells? Which cells are these, and are they doing anything about that?

It is very devastating to live being tired and worn down all the time. I am glad you, at least are able to walk, and even run some. It is good to keep moving, but be careful not to overdo it. Take time to rest also.

It is hard you are feeling so sick, and the people around you don't understand. I have been living with this for many years, and no matter how much I explain things to the people closest to me, they don't ever seem to remember what is going on with me. I just have to put up with it, and understand that it is difficult for them to understand something like this, unless they have gone through it also. Try to be patient, and realize that is nothing personal, only a bit of ignorance.

I am glad you came here. I hope you will come back and keep us updated with how things are going with you.

I am sorry for being so vague in my response. I may be able to come up with better ideas after you provide a little more information…Edie

Chronic pain throughout the spine caused by osteoarthritis (DDD). Started at neck, spread to thoracic, and lately to lumbar area. Most of my spine is affected by bulges, disc height loss and dehydration, bone spurs, annular tears, foraminal stenosis, probable nerve impingement, and degeneration at end plates and facets.

The disease extends from Cervical C2-3 to C7-T1. Thoracic T4 to T10.
Lumbar T12-L1 to L5-S1.
It is all non operable.

Other conditions
TKR R Knee.
Torn ACL, MCL L knee,
Pain on legs and calves
Deep vein thrombosis
Migraine headaches
Painful spots all over scalp
COPD
Hypertension
Chronic Hyperventilation. Caused by anxiety or stress
Chronic depression and insomnia
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Denny View Drop Down
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Joined: Oct/16/2017
Location: California
Posts: 25
Post Options Post Options   Thanks (0) Thanks(0)   Quote Denny Quote  Post ReplyReply Direct Link To This Post Posted: Yesterday at 11:05am
It really is a long story and with the fibro fog I may leave out parts.
I was taking topamax for tremors,wierd huh?
Nothing else worked,plus too many side effects. I dont mean to put down your med but it is unpredictable.
I stopped mercapto because I had a moes surgery for skin cancer on my ear and it stayed infected for almost 3 yrs. Turns out the surgeon had insewn a piece of skin with a cyst on it.
The med was stopped to promote healing.
As for still being symptomatic,with so many things wrong it's hard to tell what's what.
Periodic loose stool,wasting syndrome,fistula.
Moving out of THIS state,cant afford squat here.
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Edie View Drop Down
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Posts: 2960
Post Options Post Options   Thanks (0) Thanks(0)   Quote Edie Quote  Post ReplyReply Direct Link To This Post Posted: Yesterday at 5:13pm
 That must have been rough getting that infection after the surgery for your cancer. Normally things are like that with us chronic pain sufferers. It is like there is no end to it. The moment you begin to learn to deal with one thing, something else comes along.

I hope your doctors will eventually be able to help you disentangle the different issues affecting you, and come up with something that will be of some help.

I don't know what kind of health insurance you have. This is usually a factor in the kind of care you get.  If you are planning on moving to a different state, I hope you will be able to find a good doctor who will be willing to take charge of your health care management. It would be a good idea to check on this before choosing a new home state.

Please, don't worry about the Topomax deal. I didn't think you were putting it down. I also have problems with it. It is great for my headaches, but it races my BP, causes real bad burning in my stomach, and causes lots of pain and swelling in my ankles and legs. Not something I want to put up with either.

Take care Denny. I hope things start getting better for you soon...edie
Chronic pain throughout the spine caused by osteoarthritis (DDD). Started at neck, spread to thoracic, and lately to lumbar area. Most of my spine is affected by bulges, disc height loss and dehydration, bone spurs, annular tears, foraminal stenosis, probable nerve impingement, and degeneration at end plates and facets.

The disease extends from Cervical C2-3 to C7-T1. Thoracic T4 to T10.
Lumbar T12-L1 to L5-S1.
It is all non operable.

Other conditions
TKR R Knee.
Torn ACL, MCL L knee,
Pain on legs and calves
Deep vein thrombosis
Migraine headaches
Painful spots all over scalp
COPD
Hypertension
Chronic Hyperventilation. Caused by anxiety or stress
Chronic depression and insomnia
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