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Pain Common in Systemic Sclerosis


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#1 janey

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Posted 15 March 2010 - 04:17 AM

Pain Common in Systemic Sclerosis.

Pain symptoms are an underappreciated issue in systemic sclerosis. Only a few small studies have examined the prevalence and severity of pain in this multisystem disorder, and none has considered whether pain and clinical variables differ between the limited and diffuse cutaneous subtypes of disease. Nancy Walsh, MedPage Today. 03/09/10. (Also see: Pain and Scleroderma)

This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.
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#2 Guest_Soaring Eagle_*

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Posted 15 March 2010 - 10:12 AM

Hello to all! I think it's been at least a year since I posted anything. The item about pain caught my eye. I have been having severe pain in my neck/right scapular area. Every 4 months I get a series of 3 epidurals at C6-C7 that seem to help. I also used pain medication and Norco until a month ago. I was diagnosed with possible carcinoid syndrome in October and had to discontinue the pain medication and the Norco (which wasn't working that well anyway).

A couple of weeks ago my pain doctor put me on oral pain medication (I'm allergic to pain medication), and I have had a hard time with side effects. I got really sick after 4 days, so he decreased it to 30 mg. Even that has had side effects, so when we met today he said to try taking it every other day. I hope I can take it and avoid the side effects because I have to say the pain has been minimal. Has anyone else had experience with pain in that area and/or with pain medication?

ALSO, and this is what I'm really concerned about, I have had numbness and weakness in my right hip/leg/foot for a week. When I mentioned it to my doctor today he was quite concerned and said it is NOT a side effect of the pain medication. I have to have an MRI. Has anyone else had that type of pain? I've had nerve compression in my wrists and elbows, and I think that is part of the problem with the neck/scapular pain, too. (My doctor said that pain has its roots in nerve and muscle.) I can't find any research addressing peripheral nerve pain or nerve compression in systemic sclerosis. Thanks!

#3 pawndy

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Posted 16 March 2010 - 10:56 AM

Soaring Eagle, the pain and numbness that you describe is very familiar to me. Sometimes my neck hurts so bad I have to use a travel pillow and lay my head on it sideways to relieve some of the pain. My doctor will give me oral pain medicine but keeps telling me that it is from Fibromyalgia not Scleroderma. I tend to not agree but as long as he gives the pain medicine I guess it does not matter.

Does anyone have pain in the chest area and lungs? If I happen to take in a quick breath it will hurt to breath out and for a few minutes afterward.
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#4 Tasha

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Posted 16 March 2010 - 01:21 PM

I also have had pain when taking a breath. I went to the doctor and they took x-rays and said it was pleurisy. I was told to take Ibuprofen for it. Later that night the pain was so bad, Ibuprofen didn't help. I went to the ER and was given pain meds that did help and they gave me a prescription for more pain meds. Last October I had the pain again except it hurt to take a breath and it hurt to move from a seated position to a standing position or from lying to sitting, the pain was awful. My doctor put me on prednisone for a week and it helped, but the pain came back so the doctor put me on prednisone and a 2 week leave of absence from work with a weight restriction of 10 lbs. I also have nerve pain in my face that never goes away but neurontin does help a lot, and I have the wonderful burning pain in my neck, but it seems like it only hurts after a long stressful day at work.

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Posted 18 March 2010 - 02:07 PM

Hi, Pawndy,

Thanks for writing back. I had an allergic reaction to one of the new pain meds they tried, and the 2nd one caused such severe side effects we had to stop it. Now we're back at square one. You mentioned your neck pain. Have you also had the numbness in your leg?

#6 Jeannie McClelland

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Posted 18 March 2010 - 03:40 PM

Hi Soaring Eagle,

As it happens, we have some articles on Neurological Involvement in Scleroderma. The National Institutes of Health has this to day about peripheral neuropathy:

Connective tissue disorders and chronic inflammation can cause direct and indirect nerve damage. When the multiple layers of protective tissue surrounding nerves become inflamed, the inflammation can spread directly into nerve fibers. Chronic inflammation also leads to the progressive destruction of connective tissue, making nerve fibers more vulnerable to compression injuries and infections. Joints can become inflamed and swollen and entrap nerves, causing pain.

Has your doctor referred you to a neurologist? The MRI sounds like a very good idea. The symptoms you describe sound pretty alarming.

I have similar issues but my neck pain is completely unrelated to scleroderma and is due to some vertebral/bone spur issues and disk degeneration. I am also intolerant of most narcotic/opiate pain medications, so the pain in my neck was, well, a pain in the neck! One thing my doctor did was refer me for physical therapy. Keeping the supportive muscles strong and improving my general posture has helped as did breaking myself of the habit of loading everything I possibly could fit into a large shoulder purse and carrying it on one shoulder. (My husband says the weight I used to lug around has contributed to my being the 2nd shortest person in the family. Our 20-month old grandson is #1!)

Hopefully your doctor will get to the bottom of this and get get you some lasting relief. Best wishes,
Jeannie McClelland
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#7 Buttons

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Posted 18 March 2010 - 09:54 PM

Hi Soaring Eagle, I'm also dealing with dreadful pains which seem to start in my shoulder blade & work down my arms which can leave them numb or tingling I have also had both carpal tunnels operated on about 18 months ago. I went to my general practitioner & had a CT scan done and apparently the pain I'm getting is from a trapped root nerve in my upper spine (C4- C6) and so he's referred me to a neurosurgeon because he thinks it will need a decompression operation. I do get some tingling in my feet & he said this could all be linked. Apparently my discs are showing 'too much degeneration for my age', I also have some big with my lower back and the pain can be really dreadful that I just take myself to bed.
When mine flares up really bad no pain killers seem to work & I just don't know what to do to try to relieve it, I don't really want an op but would like to know if there is some sort of exercise that I could do to try to ease it.

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Posted 19 March 2010 - 09:50 AM

Dear Jeannie, Thank- you for your response and the helpful information. I will share it with my physicians. It's been a wild ride the last 14 days. On top of everything else, I took 30 mg of a long-acting narcotic drug (I don't think we can say names; he was hoping I could tolerate the lower dose) Monday morning and about 45 minutes later got in the shower. I got very dizzy, lightheaded and nauseous in the shower and sat down for about 10-15 minutes (I think). When I felt like I could stand up and could get to the phone to call my husband to come help I did, and when I stepped out of the shower I fell and hit my head. I went to my internist Wed because I've had an atrocious headache and lightheadedness even without taking the medicine ever since I fell, so her thinking, along with my pain doctor whom I saw today at the request of my internist, think I may have sustained a mild concussion because I shouldn't still had side effects from the meds 5 days later. Oh well. The MRI is scheduled for next Thursday, and he has mentioned referring me for EMG testing pending the MRI results. He did mention today a durogesic patch. I"m small, too (5'1" 115 lbs) so we're going to try the pediatric dose. I told him I don't want to do anything new until all these other symptoms clear up and he agreed with that. SO, like you said, it's a pain in the neck (and scapula and hip and head and leg and foot) for the next few days! Oh well, at least my doctors are staying on top of it and communicating with each other, my husband has been wonderful, so it could be worse. I feel like there's an end in sight, we just have to take a winding path to get there.

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Posted 19 March 2010 - 10:04 AM

Hi, Buttons! Thanks for writing and sharing your story. I don't get the pains down my arms like you mention, but definitely the scapular pain. I used to have the pains and numbness in my arms, but my rheumatologist thought the arm pain and scapular pain weren't related. It was a while ago and I don't remember how he finally diagnosed it, but he found out I had nerve compression of the ulnar nerve running through my elbows. I had ulnar nerve translocation surgery on both elbows in which they removed the compression and re-routed the nerves in my arm and it took care of the problem! Sorry to hear you have to go to bed to get relief - I've pretty much been in bed the last 2 weeks and it's no fun. I hope you don't have to have surgery. Jeannie mentioned physical therapy - have you tried that?

#10 pawndy

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Posted 20 March 2010 - 11:22 AM

Soaring Eagle, yes I have pain and numbness in my legs, feet, hands, and right side of my face. In 2002 I almost died from a unidentified viral infection which left me with some damage.
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