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#1 Lucy H

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Posted 13 January 2010 - 04:43 AM

I am so frustrated and upset that I actually was insane enough to hope for a positive result on my mixed connective tissue blood test (check for inflammation). That would have at least told me what this weakness and pain is in my arms and legs and how to deal with it. My tests came out negative. I know logically that I should be thrilled. This is just impossible to deal with. I am so miserable. I have the CR of CREST so my rheumotologist says that I do have scleroderma. I have an ANA of 1:5120, pretty severe secondary Raynauds- mottled areas on my legs, white fingers/toes, and calcinosis on my fingers. My biggest problem that I really need help with is a severe weakness and ache in my thighs and upper arms. It feels like my muscle stamina is gone. It comes and goes in severity but an ache is always there. Feels like I exercised to the brink and have that "burn" that you get when you just can't get up. I haven't exercised. I can't blow dry my hair, carry a grocery bag, walk for any normal distance, etc. What do I do??!! My doctor says that this is not associated with CREST. Do any of you have this too? Now I am supposed to go to a neurologist to check the nerves in my legs since the blood work was negative. That makes no sense to me? Arms and legs with nerve issues? Timed with increased severity of Raynauds and circulatory issues coincidentally? Does anyone have this with their scleroderma like me? I can't believe I am upset to know that it's not myositis. Am I nuts?

#2 piperpetpete


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Posted 13 January 2010 - 06:51 AM

No Lucy, you are NOT nuts!!! I too have the burning in my arms and thighs mostly. I also have tingling and muscle twitching. Mine always got worse after exercise but in the last two weeks it's been so bad, I've been bed and chair bound.This , for me, has been going on for 14 months, getting to this point! I've had a EMG AND nerve conduction study but that was back at the beginning, Nov. of '08. I see the sclero specialist at UAB on the 26th. I'll let you know if she has any other thoughts on this.

#3 Jeannie McClelland

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Posted 13 January 2010 - 07:31 AM

Hi Lucy,

It's only natural to be disappointed when you don't get an answer to a problem. I'll be surprised if there are any of us who haven't felt that way at sometime.

I'm not a doctor, but sending you for a neurological consult does make sense. They'd want to rule out things like peripheral neuropathy which could cause not only the burning/tingling, but depending on the kind could also cause some muscle weakness. I'm not sure of the actual mechanism of action, but I think if the nerve signals to the muscles aren't strong enough or aren't getting through, the muscles that are served by the affected nerves won't know you are asking them to do something. Or something like that, anyhow. :blink:

I hope you get to the bottom of this soon, I know how frustrating it can be.
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#4 Amanda Thorpe

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Posted 13 January 2010 - 09:37 AM

Hello Lucy

It seems to be that there's not much worse than having a symptom, particularly one that is debilitating, and have no diagnosis to pin it on. Having said that having the wrong diagnosis would be worse because you'd never get the right treatment for the condition. Seeing a neurologist is a good thing as is the fact that your doctor is prepared to have the matter investigated rather than dismissing it or pinning it on the usual suspect...scleroderma.

Take care and keep us posted.
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#5 ladyhawke


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Posted 13 January 2010 - 02:02 PM

I had what you describe when I first got diagnosed 3 years ago. I had no strength anywhere, I couldn't even make it to the bathroom on my own, my legs just wouldn't hold me up and I couldn't get dressed or undressed, couldn't lift my arms over my head. Once I got on the prednisone and imuran it all started working again. I don't know if you are on anything as of yet. I started the prednisone first at 80mg's a day and noticed within 3 days that I was getting my strength back. The stamina took over a year and I still don't have what I used to have. Good luck, don't lose hope, there IS an answer out there, it's just finding it. - Hugs - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#6 eah


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Posted 13 January 2010 - 03:08 PM

I have the same symptoms along with CREST, Raynaud's and Sjogren's. After many negative tests, I was tested by a neurologist and was diagnosed with severe non length dependent small fiber neuropathy. This does not show on an emg. It is also worse in the cold weather. It also is worse towards evening and when I am sick. I now have severe numbness and tingling in my lower and upper legs and in my hands and arms. I also have numbness in my mouth, tongue, jaw and face. I was told it was secondary to Sjogrens. The neurologist is the way to go. If an emg does not show anything, see if they will do a skin biopsy for small fiber neuropathy. Hopefully you will find some answers. It is not unusual for us to want answers to our symptoms even if the answers are not what we would normally want. I wish you all the best.

#7 summer


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Posted 14 January 2010 - 05:53 PM

You are not alone,I have Crest/Scleroderma, and also have severe
muscle weakness, especially in the upper arms. To peg the washing out
can become very painful. All of my tests also came up clear. I possibly
also have peripheral Neuropathy, this will be investigated soon.

Maybe there is a link with all of this

Good luck

#8 omaeva


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Posted 15 January 2010 - 07:47 AM

I'm in the same boat with muscle pain.
Most of my days I spend just drugged on pain killers (pain medication at night, pain medication during the day)
A few times I felt that I was feeling better and opted not to take my nighttime medication, needless to say I couldn't move the next day at all.
My doctor put me on Cellcept to see if that would help, but it doesn't look like it.
He is thinking a viral infection could have triggered a fybromialga type of effect because it came about after I was ill for a month with a flu/cold.

#9 jaateach


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Posted 15 January 2010 - 04:56 PM

Hi Lucy,

The symptoms you speak of, the weakness and the "burn" in your muscles are exactly what I had been experiencing. Even after I was diagnosed with progressive systemic sclerosis my dr. did not think that the diagnosis of pps was responsible for the muscle issues. He sent me for some lab work to be tested for mitochondrial disorder and sure enough, I was positive. Only after treatment for this did I start getting better. Mitochondrial myopathy has a large spectrum of symptoms, similar to scleroderma, but it hits hardest in the muscles. Your symptoms sound classic mitochondrial myopathy. I would ask my doctor. if I were you. The blood test is pretty simple. Its a forearm ischemic test. They draw blood at the beginning of the test to get a baseline. then you squeeze a rubber ball for a minute of so then they redraw blood and this goes on for a while and what they do is check for spikes is lactic acid and ammonia and other metabolic waste. Mine was sky high. I hope you feel better. Please keep us posted. Joe

#10 Lucy H

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Posted 16 January 2010 - 10:58 AM

I really want to thank all of you who have responded to my post. You have provided some great info that I will definetely explore. I can't express how helpful it is to hear from people who "get it". I feel for those of you who clearly are suffering much more so than I am, & I truly appreciate the support & suggestions.

#11 sarasmile


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Posted 21 January 2010 - 07:20 AM

I was about to post something exactly like this. I don't think mine is quite as severe as yours, but I have had a constant muscle pain in my arms/legs for about 4 months now. Then, when I went to the rheumatologist, they tested my muscle strength and it was extremely weak. It comes in waves, and I notice the pain/weakness the most in my arms. I'm still in the diagnosis process, but I don't really have raynauds or some of the other markers of sclero, but my ANA very elevated (though not off the charts like yours).

Mainly, though, I just feel your frustration. I've learned to cope with other symptoms, but not being able to pick something up off a shelf or hold my arms out for more than a few seconds, not to mention the constant pain, has been the most frustrating thing I've dealt with. Everytime I really feel the effects, I either get angry or want to cry or both. I'm only 22, and I worry about it getting worse and not being able to carry on a normal life. I'm terrified that when my husband and I choose to have children that I may not be able to carry them around and keep up with the demands. I'm tired of hurting ALL the time. It came out of nowhere and hasn't gone away. I'm hoping that when it gets warmer it will subside some.

I'm normally an extremely positive/optomistic person, but this development has really got me down. I have a follow-up appointment with my rheumatologist in a few weeks, so hopefully I'll get some answers and fixes soon.


#12 CraigR


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Posted 21 January 2010 - 01:39 PM

I get something very similar - in the upper body. It is also very similar to the feeling of a very bad burn from too much exercise. It usually starts in my neck or shoulders, and then travels down to my chest, making it painful to breath.

Anytime this is going on, I have increased inflammation indicators. You may want to get this tested. See how the tests come out during an episode and when you are feeling better. The tests are Erythrocyte Sedimentation Rate ("ESR" or "Sed Rate") and CRP ("C" reactive protein). This may provide evidence of an inflammatory process)

Good luck,


#13 debonair susie

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Posted 23 January 2010 - 10:32 AM

Hi Lucy,

...and this is the great support I continue to speak of in so many of my posts.

We are as different as snow flakes, in that none of our symptoms are going to be exactly the same. Yet, some of us have commonalities, as far as our experiences of our various illnesses are concerned, which makes this such a wonderful place to express what we are experiencing.

When I was diagnosed in August of 1995, I had no computer/internet, so I was completely overwhelmed by all of the information I was given, by the gastrointerologist. I had been experiencing symptoms of Raynauds, Fibromyalgia (muscle/joint pain, Gerd, Psoriasis/PsA)...some since 1983, but the GERD since 1991.
A battery of tests were run, which was good, yet quite frustrating for me at the time.

I also have great empathy for you and what you are experiencing, as do so many others, as we've seen, in response to your post. I can say that these symptoms may well ebb and wane, which is good.

The more empowered we become with knowledge, the better our ability to communicate with our doctors, thereby becoming our own best advocates where our healthcare is concerned.

Please keep us in the loop, as to how you are doing?
Special Hugs,

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