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Does anyone's symptoms match mine?

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#1 adramafreezone



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Posted 19 November 2009 - 01:47 PM

I would like to know if anyone else has experienced the symptoms that I have. For years I have gotten very cold hands, especially fingers. Typing and doing tasks with my hands are big factors. In cold or mildly cold weather they get stiff,painful and cold. It seems to be getting worse, the other day my hands were 'frozen' to the shopping cart handle and I had to pry my hands off it. I have been told it is NOT Raynauds because there is no color change.

I was diagnosed in 2007 with Hashimotos. I have developed joint pain over the past year. I have had tendonitis in my elbow for the past 11 months and I cannot get rid of it. I have had tendonitis in my wrist for 3 months now and it has a very painful click when I rotate it. I am getting these little patches (about 1 1/2 inch in diameter) of petchaie on my thighs and buttocks every few weeks or so, but I am told they are not serious because they are not widespread, I will get like 4 of these patches at a time in various parts of my thighs they are never painful but they itch just for a second when the capillaries pop.

My shoulders are killing me when I sleep and when it wakes me from a sleep I feel very stiff and painful. If I bump my upper arms just a little it feels like someone punched me. Now the past month I have developed really bad indigestion, heartburn and a lot of burping. I have only had indigestion and heartburn during 2 of my pregnancies.

I have tested positive for ANA speckled and homogenous, I had titer of 1:160 and 1:320. I also have a positive Extractable Nuclear Antibody and a positive Anti Histone antibody, I had a high RF of 60 (with reference values of < or 6.) As for my joint pain the pain isn't from using my joints, its from not using them. If I am immobile for a short time they freeze in place in pain and its hard to straighten them out, but once I start moving its okay.

I have been told fibromyalgia one too many times and I just don't buy it. How can I have so many different antibodies in me that are related to MCTD, scleroderma and lupus and not think I will get it? I can understand having one positive antibody and a chance of not getting anything, but 3 antibodies related to these diseases? It seems like it would make my chances greater to get one of them. I thank anyone for their input.

#2 Shelley Ensz

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Posted 19 November 2009 - 03:09 PM

Welcome to Sclero Forums. I'm sorry it's because you feel you are not diagnosed or misdiagnosed. As it happens, none of us are doctors and so, of course, we are unable to diagnose or even to narrow down the field of possibilities for you.

It sounds as though you have already settled in on MCTD, scleroderma and lupus. Perhaps you could get a second opinion, from another rheumatologist, to see what they might think?

In the absence of Raynaud's or tight skin or pulmonary fibrosis, it becomes more and more unlikely for it to be scleroderma. It is possible to have various antibodies but still not develop or progress with any autoimmune disease (plus, Hashimoto's is an autoimmune disease right there.) Fibromyalgia can cause nearly all the symptoms you mention, so the way to approach it is to see if you have or develop any symptoms that fall outside of that.

Also, fibromyalgia is nothing to sniff at, in itself. I have it and I would gladly give it away to someone else...provided of course they were a certified lifetime enemy who would have no way of exerting revenge upon me. I mean, really, it's awful stuff, and hard to live with every day. And, maybe the lupus boards could be of more help in trying to discern if your symptoms are more lupus-like, or not.

Another thing with fibromyalgia is that it can make you feel truly rotten, through and through and from head to toe. So those who "only" have fibromyalgia and nothing else can have a terrible time believing that they don't have a fatal, undiagnosed disease. If you regularly survive annual physicals with no dire findings from the heart, lungs, kidneys (etc.) or do not have disease-specific findings, then perhaps that's all there is, or at least, likely to be, right now.

That's just my two cents, and that's probably about what it's worth, too. Maybe less. But you may want to see our page on Difficult Diagnosis. And always feel free to get a second opinion from another rheumatologist; we simply can't say either way, what is, or what isn't, you know?
Warm Hugs,

Shelley Ensz
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#3 janey


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Posted 22 November 2009 - 09:33 AM

Welcome to the Sclero Forums! I'm sorry that you have so much joint pain and other uncomfortable symptoms. Your cold hands sound very strange. I agree that it doesn't sound like Raynaud's because of the lack of color changes. I have Raynaud's and, when it's a really bad episode (totally white fingers), it's painful and I have no feeling at all, but they don't get stuck to anything.

I second everything Shelley said. Your symptoms, particularly the joint pain can be caused by so many conditions and diseases and that it isn't necessarily a symptom of scleroderma. The only time I have joint pain is at night and even then, it's sporadic.

Please keep track of all of your symptoms and in close contact with your doctors. Hopefully you can find the root cause to your symptoms soon so you can have some relief.
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#4 kiby1



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Posted 29 November 2009 - 10:04 AM

Hi, I was first diagnosed with probable scleroderma-connective tissue disease that has morphed into a firm scleroderma diagnosis after about 7 months of waiting and seeing what the symptoms do. Aside from minor Raynaud's that is progressively getting worse, and feeling cold easily-especially hands and feet, my most debilitating complaint is tendonitis and stiff muscles-neck, shoulders, back, lower back and hamstrings. Oh, and fatigue. I used to be VERY active but now just don't have the energy to push past the pain. It feels like everything is a little inflamed and my back is so tight it is debilitating. I am afraid to do the things that will give me tendonitis (tennis, running) because it now takes forever to get rid of. Occasional heavy duty pain meds help, more with the energy level than actual pain relief, I think because pain meds aren't able to relieve the constant tightness. My back can get so tight it burns across my hip bones. I do 20 mins of stretching every morning just to be able to drive to work and sit in front of a computer. My shoulders ache from sleeping on my side and the discomfort wakes me up several times each night.

This is not fibromyalgia (for me anyway). I think it goes with the collagen territory. I will let you know what I find that helps. I could use some good advice,I'm trying to come up with a good "pain plan" to not feel so uncomfortable and more in control of what's going on. I think it's beginning to wear me down emotionally/mentally and I don't want to go there, if I have to slow down I don't want it to be because of my state of mind, the physical symptoms are enough, thank you very much!! Heat helps a lot, stretching in a warm pool helps, and pilates helps. Yoga helps if I start slow and not when I am at my worst.

#5 Jeannie McClelland

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Posted 02 December 2009 - 04:30 AM

Hi Kiby1,

Have you looked at the section on Pain Management in the Main ISN Site? There, and in the section on Emotional Adjustment there are scholarly articles and tips from both medical practioners and patients alike. Not every strategy works for every person~

I was refered to a pain specialist and found her to be very helpful. That was before my diagnosis - just having that helped a lot too. It seems there is something in my make-up that always wants to know. Once I do know what is causing a symptom that is bothering me, my mind seems to say "Oh, it's just that. Well, now that I know it's nothing worse, I can ignore it." Not to the point of not taking my medications, or entering a marathon mind you, but I am able to dampen anxiety down to the point where I can ignore that. Posted Image

I think we all need to find an approach (coping skill, if you will) to deal with symptoms that are affecting us, as well as finding a successful strategy to deal with the physical effects of those symptoms.

Best wishes,
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#6 Amanda Thorpe

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Posted 02 December 2009 - 07:23 AM

Hello Kirby1

Welcome to the forum! As unpleasant as a diagnosis of scleroderma is it is better, in my opinion, than the diagnosis of "I don't know" or "No diagnosis" as adramafreezone could confirm. At least you now know what you are dealing with and you can begin a treatment plan.

You'll find your way of living with the uninvited guest Mr Scler O Derma, as we all do as Jeannie said, it's differnt strokes for different folks!

Take care and keep posting.
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