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Fibromyalgia And Scleroderma


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#1 KarenL

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Posted 12 November 2007 - 12:31 PM

Hi,
I just got another diagnosis, fibromyalgia. Is it common for it to go along with Scleroderma? How can they tell the difference? Is there separate treatments? What next? :(
Karen

#2 janey

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Posted 12 November 2007 - 04:13 PM

Karen,
So sorry for yet another diagnosis. :( There are several member of this forum with fibro, but whether or not it is common with scleroderma, I don't think so. The jury is still out as to whether or not fibro is even an autoimmune disorder. Some sites say - yes, some say - no. According to MedicineNet.com, "despite potentially disabling body pain, patients with fibromyalgia do not develop body damage or deformity. Fibromyalgia also does not cause damage to internal body organs." You can read the whole article at fibromyalgia. I found this article on our ISN fibromyalgia page. There's lots of information on this page. In the treatment section you'll find that the treatments is quite different to scleroderma. I hope this helps.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#3 debonair susie

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Posted 13 November 2007 - 12:17 PM

Hi Karen,

I was diagnosed withFibro long before Sclero.

Janey's putting you on to the Fibro link was a great thing, as there's great info there.

Hugs, Susie
Special Hugs,

Susie Kraft
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#4 Lauriejill

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Posted 13 November 2007 - 12:41 PM

Hi Karen,
I have both fibro and scleroderma too. I was diagnosed with the fibro first about 8 years ago. The treatments are not the same and you will be able to read all about fibro on the link! Dr. Furst at UCLA thinks that cymbalta (an anti-depressant) is the drug of choice for fibro pain as there have been some drug studies showing it to work best. I was on 30 mg. and saw no chance in the pain so he upped it to 40mg (today) and then to possibly 60 mg. depending on how I feel.

I also have sleep apnea and use a cpap to help me get a decent night's sleep. He says the cymbalta should help with that too.....

I also take advil for the fibro pain which always gets worse when I am under stress. Exercise is recommended and a hot tub would be fabulous!!!!!!

Hope this helps.
Lauriejill

#5 Sam

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Posted 13 November 2007 - 02:33 PM

I was diagnosis with Fibro a few years ago.. It seems many of us have fibro though, so I would say yes, that it would go hand in hand with any auto immune. Sam
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#6 Patty

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Posted 13 November 2007 - 03:56 PM

Hi Karen,

I got my diagnosis for sclero last year then a few months ago while I was complaining to my dr about how much pain I was in, she checked me again and said I had fibro. She did nothing to treat it so I just am learning to live with the pain. I hope that your dr will do something to help you. its bad enough having one chronic illness let alone 2 ( in my case I also have dermatomyositis as well so for me its 3). I am going to a new dr in a couple weeks so I plan on asking him how fibro fits into everything. I will try to remember to post back about what he says.
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#7 WestCoast1

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Posted 13 November 2007 - 05:56 PM

Hi Karen,
I am sorry to hear that you have yet one more illness to deal with. Here is a great link to the ISN with many articles about Fibro.
http://www.sclero.or...gia/a-to-z.html

I don't know how common it is to have both Fibro and Scleroderma, but I can tell you that a few years ago a specialist gave me a diagnosis of "Fibromyalgia~like" illness. With this, my primary began treating me for Fibro with muscle relaxers, and physical therapy. But who really knows if it was a precursor or if the Fibro like pain was all related to the autoimmune illness of a mixed connective tissue dissorder. I think that this is one of the reasons why doctors have such a struggle trying to discifer one illness from the other....they all kind of flow together.

I think that it is all up to you, and your doctor of course, if you want to persue treatment. It is not progressive, but if not taken care of, it can really interfere with your daily activities. I was told by my primary to try water arobics/stretching, yoga, rest and physical thearapy. (along with a few medications to treat some very unpleasant symptoms)

Since then, I really feel like I know what works and what doesn't. What I hope that you get from all of this is a piece of mind that you can make it through one more thing, and that you will be okay and find a good method that works for you. Thanks for sharing your story and please let us know how you are doing!
*WestCoast*

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#8 summer

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Posted 13 November 2007 - 10:58 PM

I was diagnosed with Limited/Crest Scleroderma in Feb this year, I was also diagnosed in March this year with Fibromyalgia. I was having alot of pain/soreness right in the middle of the chest area especially if I pressed down on the rib cage going towards the sternum/chest. I also have bilateral stiff/soreness in the achilles tendon which has now moved up to the calf area.

My rheumatologist prescribed Endep (amitryptiline) which is an anti-depressant as well as a pain reliever for Fibromyalgia. This has helped me immensely with the pain in the chest - which has now subsided. Unfortunately not so with the achilles tendon.

For me Sclero symptoms came first then secondly Fibromyalgia.

Take care
Celia :rolleyes:

#9 nan

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Posted 14 November 2007 - 03:34 AM

Karen,
I have both, but I don't know that they go hand in hand. I was diagnosed with Fibromyalgia, Sjogren's, and Raynaud's in 1998 and got scleroderma diagnosis in December 2006. I think that fibromyalgia deals more with widespread muscle pain and I think scleroderma messes with tendons and joints, but I can't promise. I take amitriptyline for sleep.
Good Luck!
Nan

#10 Kim T

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Posted 18 November 2007 - 12:58 PM

I was diagnosed with CREST and a few years later with fibro. The doctors insist they are separate but I'm sure they're related. Most of my pain is in my hips with a lot of stiffness. I've just read the sclero patients they studied had abnormal biochemical responses in the muscles that would explain the muscle fatigue, etc.
Kim

#11 Gizelle

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Posted 18 November 2007 - 05:58 PM

Yes, I have Fibro, too. My Rumatologist diagnosed me with it about 3 years before the Scleroderma. He told me that usually when you get Fibro, it's because of another underlying disease. He didn't say which disease, though. Gizelle

#12 Buttons

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Posted 18 November 2007 - 10:54 PM

I was diagnosed with Fibro in February of this year after being sent to a rheumatologist with a positive blood test for something autoimmune. He told me I had Fibro but wanted further tests doing, more blood tests & xrays. Eventually in July I was passed to see another rheumatologist who I still see, he diagnosed me with SSc & I asked about the Fibro - did I have it or not? He told me he prefers to put everything under one umbrella & said I had 'fibromyalgic like symptoms'. You may gather by that that he doesn't really believe it is an illness but is part & parcel of another problem & in my case is SSc.

Jensue

#13 Rachelle

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Posted 19 November 2007 - 01:31 AM

My only diagnosis right now have been fibro and endometriosis. I have flares of the fibro and my doctor recommended light aerobic exercise and stretching, but he warned against too much exercise or weight training. I take anti depressants and believe they do help with the fibro. He has prescribed me muscle relaxers in the past during flares, but I dont find them helpful.

#14 Piper

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Posted 19 November 2007 - 06:27 AM

Hi, I also was diagnosed with fibro 3 years ago. I have had 3 of the symptoms of CREST since then but have never been diagnosed with that. (severe GERD, Raynauds, T's) I also have a whack of blood tests being off and my g.p tells me I have a "grumbling disease". I don't know what to think, especially since my hands are hard now. I am also on amytriptylene and it helps some but I still have tons of pain. This is getting me down because the rheumatologist I saw also sees my friend with lupus and told her that she couldn't have fibro because " it was a wastebasket diagnosis". What is wrong with me then? VERY DEPRESSING to think this is all in my head. Sorry, I'm of no help.
Hugs, Piper

#15 debonair susie

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Posted 19 November 2007 - 06:48 AM

Hi,
Just wanted to add that muscle relaxers didn't help me either, even though I was only prescribed Flexeril YEARS ago!

Hugs, Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#16 KarenL

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Posted 23 November 2007 - 02:25 PM

Thanks everyone, it's all very interesting for sure. I wonder why the doctor warns against weight training? I'm really nervous because I seem to be getting weaker and weaker, any knowledge of that?
Karen

#17 Rachelle

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Posted 23 November 2007 - 07:21 PM

My experience with weight training is severe pain. I think our muscles are affected more so than others or we experience the pain from weight training at a more severe degree. Even leg lifts and standing up and doing the push ups off the wall make me so sore. I have to take exercise really slow or I get so sore I can't do them regularly.

#18 janey

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Posted 24 November 2007 - 08:12 AM

Karen,
Because I also have polymyositis I was told to forgo weight lifting or to use really light weights. I should never exercise to fatigue and if I'm sore afterwards, I did too much. Too much weight can actually cause more inflammation. So now I just use those exercise bands rather than free weights or machines.

Big Hugs,
Janey Willis
ISN Support Specialist
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(Retired) ISN News Director
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International Scleroderma Network (ISN)

#19 beaty71

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Posted 24 November 2007 - 02:58 PM

I also have scleroderma and fibro, in October my doctor wanted me to try Cymbalta for my fibro. I have terrible pain in my hips everyday, and in my back I have pain and a burning sensation. I really didn't think it would work , but after about 2 1/2 weeks I noticed my hips were no longer in pain nor is my back. It doesn't help me with the sclero related pain (for me it is mostly my hands) but it has been a life saver for me. I also have no side effects from it, I prefer it over strong pain meds all the time. I would say it's worth checking into. Hope this helps a little. Stay warm. Diana
Diana