Sam

RE: hand pain

28 posts in this topic

akchrist,

 

Thank you from the information. I am going to look it up and talk to my doctor about it. It does make sense.

 

Thanks again,

Nina Lynn

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Hi, all, hope today finds you better than yesterday!

 

Just had another few days of doctor visits - first with my primary physician, a wonderful and caring doctor - to investigate years' symptoms of carpal tunnel-like numbness - mostly on awakening, one hand or the other will be half numb, on the right it's always the thumb and first 2 or 3 fingers, but on the left it's just as often on the pinky side of my hand into the pinky. Over the years, the right hand especially is progressively having more daytime episodes as well, falls asleep during writing, driving, holding a cup, etc. The last month I've lost a lot of sensitivity in my fingertips and I'm frequently dropping things. I've gotten numbness in my feet often for the past few months too. I'm also having new symptoms of Raynaud's over the past couple of months.

My doctor sent me for nerve conduction tests and an EMG on the forearms, told me it could be carpal tunnel or neuropathy from the sclero, he suspects it is a combination of both. He said we'd talk after the tests, as surgery may only partially solve the problem, and we'd need to discuss the options with the rheumatologist.

 

Had the tests done yesterday and are abnormal, the doctor who ran the tests said I definitely had carpal tunnel, right much more than left. When I asked if any of the symptoms or test abnormalities could be due to the sclero, he sarcastically asked who told me I had scleroderma, he didn't see any sign of it! (This after having to soak my hands in warm water for 15 minutes before the testing because he told me my hands were too cold to do the tests!) When I gave him the name of my rheumatologist (a well known expert locally) he backed off on the sarcasm, but repeated that I have carpal tunnel syndrome.

 

Am trying to wait patiently for my primary to call, but you know how that is!

 

My questions - do the tests reveal whether it's purely carpal tunnel, i.e, can it distinguish between that and of neuropathy? For those of you with scleroderma who've had carpal tunnel surgery, did you get complete or only partial relief from the numbness? I'd hate to have another surgery only to have disappointing results!

 

Will let you know what my primary says,

red

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Red,

I always get a kick out of doctors that say "you have no signs of scleroderma!" Except for my beautiful mouth area, I have no signs of sclero, but I definitely have it. You did good in giving him the name of your rheumatologist. Way to stand up to the guy!

 

The symptoms that you described were the same I had when I was diagnosed with carpal. Fortunately, I tried wearing the wrist braces before consenting to surgery. I wore the braces religiously for several months and they did the trick. My right hands falls asleep every once in a while during the night, but that's it. Nothing I can't live with. If you haven't tried the wrist braces, I would give that a try before surgery.

 

As far as the EMG being able to diagnosis for neuropathy as well, I have no idea. I did find the following abstract on our vasculitis page. Raynaud's is a type of peripheral vasculitis, so this could be relevant to your condition (but I am no doctor, so that is just a guess).

 

Diagnosis and therapy of vasculitic neuropathy. Consensus statement of the German Centers for Neuromuscular Disease.

 

Let us know what you decide! I hope you get some relief soon.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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This is how my sclero started. It first was tingling of my hands and feet. Then it turned to numbness. I saw a neurologist whose specialty is peripheral neuropathy. He was sure more was going on and had me see a rheumatologist who then diagnosed the systemic sclero, sjogrens, raynauds, and now polymyositis too. I have had at least 3 of the muscle tests and I have muscle damage up to my knees. I used to have shooting pain that would randomly happen in my arms and legs. Now that has changed to continual pain in my legs and arms. It is constant and very painful. I wear a pain patch that I change every 3 days and also in addition have to take pain meds. This, along with the terrible fatigue and gerd and lung involvement are my sclero problems that I have now. The neurologist has no idea if the muscle damage will continue or not. I was on Lyrica and Neurotin for a while but have discontinued them both as they haven't helped.

 

I hope this is of some help.

 

Warm hugs,

 

Peggy

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Hi Red,

 

My experience mirrors Janey's. Not much visible from the outside, but my rheumatologist has no doubt about what I've got either. When another doctor made a similar comment to what you heard, my rheumatologist said she should stick to her specialty and leave his alone. :)

 

I get the numbness in both hands. The doctor who ran my tests suggested trying the braces, knowing I was unlikely to agree to surgery. No improvement. No surgery, either! :lol:

 

The National Institutes of Health's National Institute of Neurological Disorders and Stroke have a good Carpal Tunnel Syndrome Fact Sheet that might be helpful to you. It details the steps necessary to achieve a diagnosis, types of surgery performed along with risks and outcomes, and alternatives to surgery, etc.

 

Good luck and best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Red,

 

I had a carpal tunnel release surgery back in 1989 on my right hand and it seemed to help.

 

Unfortunately, I developed a sudden onset of neuropathy in both arms from the elbow down in 2003, went to bed one night fine and woke in the morning not able to use or feel either hand. With physical therapy and adaptive aids I have regained much of the use of my hands, though I have no sensation at all in my fingers (makes typing fun and wears out the backspace key) and my hands are still weak. They never found the 'exact' cause of the neuropathy, I have no plaques on my spine or brain so it is not MS, my blood sugar is dead normal and no sign of a stroke.

 

There are things that I do to adapt to my 'fumble fingers' (dropping things) such as use water bottles with those sip tops instead of glasses. That way if I do drop it there is no breakage and no mess. I use utensils with very wide grips and wrap them with self-stick sports wrap to make them more 'grippy'. (Perfect for hair brushes, tooth brushes and pot scrubbers as well) Get yourself one of those food choppers that you place over food then tap on to chop to cut down on using a knife to do this, it will help prevent knicks to your fingers from a slipping blade. Get a T-bar peeler instead of a straight line one, they are easier to control and you have less of a chance of accidents.

 

Bracing is a good thing to try before surgery (as Janey and Jeannie have said) and I found before my carpal tunnel release that sleeping with it on would help with my hand falling asleep at night.

 

I have heard both good and bad outcomes from the surgery, so I think that it is a subjective thing that you will have to probably have to decide on your own. Weigh the surgery and recovery against what you have to deal with now. Immediatly after surgery and for a few weeks after you will have little to no use of your hand because it will be very tender, meaning that you will probably need help with every day activities. You will have to be very careful during the healing process to avoid any repetative motions (such as typing with that hand) and protect it from bumps and accidents.

 

When my surgery was done, they cut the tendon at the base of my palm and there were times (prior to losing feeling in my hands) that I would accidentally hit that spot on something (like the edge of the counter) and would see stars because the tendon that cushions that area is gone. I do not know if they still do the surgery this way, so maybe others can tell you that.

 

I hope that some of this might help.

 

Warm hugs,

Penny

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Hi Red

I had both hands done last year, right hand in July & then the left one done in September. My left hand was worse & there was some atrophy because I'd had the symptoms probably for about 18 months. They used to be awful during the night & I would often wake up with my hands totally numb but since having had them done they are so much better, I can't say 100% but about 85%, the doctor did say that because of the atrophy I probably wouldn't get full function back. Like Penny says you need to be take care while it's healing, because it's so easy to bang the heel of your hand just doing everyday day things.

The only issue I had was because they put ordinary stitches into my right hand & they could not get them out - it was very painful and in the end had to put in a local anaesthetic to remove them. Thankfully they put different stitches in my other hand which although they didn't dissolve the nurse could cut the knots off & then I soaked it in warm water & pulled them out myself.

My Rheumatologist said that it was quite common in the early stages of SSc. & it was him who ordered the nerve conduction tests after I'd mentioned it to him in clinic one day.

 

Jensue

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Hi Red,

 

I was diagnosed with carpal tunnel -- both wrists -- before I got the Scleroderma diagnosis. I had the release surgery before the Sclero diagnosis. My first surgery was an open, done on the right wrist first... the left wrist was done 6 weeks later endoscopically.

 

My rheumatologist told me that the Scleroderma induced the carpal tunnel -- it came on quickly. Only a period of a month and it was advanced, which was hard for both the doctor and I to believe.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thank you all for your input. Penny - I liked your term "fumble fingers" - yes that's what I'm having! - and will try some of your suggestions for the kitchen work. I use both hands to drink my tea and coffee now - not only prevents dropping the cup but warms the hands as well!

 

My primary called today to give me the official results - he said I definitely have carpal tunnel in both wrists, right moderately severe and left not as bad, probably caused by the scleroderma, and he's recommending surgery for both hands. He said he can't say for sure if I'll get 100% function back, but if I don't have the surgery, it will most likely progress to where surgery may not help at all. Susie - like you, it's gotten much worse in a short period of time, since my sclero diagnosis last August. I've had the nighttime numbness for many years, and did the splinting at night a few years ago, with partial relief. My doctor said he doesn't recommend splinting now, he feels that the morning stiffness I get will only be worsened by it, and at this point surgery would be the most effective treatment. He's referred me to an orthopedic surgeon, but I think I will check with the rheumatologist in the meantime, I'd like to avoid surgery if at all possible -- maybe Lyrica would help. Trying to grasp at straws here!

Thanks for listening

Red

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Hello to All.

 

Susie, you and I have similar stories. My carpal tunnel occured in my left hand and 2 months later, the right. After suffering miserably too long, I finally saw an orthopedist in May, 2008 who recommended the surgery after the nerve conduction test. I was ready for it; best thing I ever could have done. It was such an easy surgery, and recovery was a breeze. I don't know why I waited as long as I did. This was July.

 

The right hand was released first, and we were going to schedule the left about 6 weeks later. I needed dental work, and in August my dentist asked me if I had arthritis of the jaw, or perhaps TMJ. Of course, I told him that I did not.

 

My carpal tunnel symptoms disappeared in my left hand, and my orthopedist said not to have surgery if there was no pain. It was in October/November that I started with the sclero symptoms in my feet. So the carpal tunnel and jaw condition was the sclero at work.

 

It is easy to see the sclero in me. I have lost 20 pounds when I did not need to lose any weight. My arms and legs are skin and bones. I have joint contractures in my hands and very little range of motion in my ankles and knees. My feet are discolored red and white from the Raynauds, and hurt all the time. Sclero has been quite aggressive; like a race car.

 

Hoping for restoration of health in all of us,

HONEY

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Honey, I'm so sorry you're having all these problems. Do you have a good rheumatologist who's keeping track of what is going on?

 

Best wishes and warm, but gentle, hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Thank you, Jeannie, for your concern.

 

Yes, I believe so. My orthopedist recommended her to me, even though she is 30 miles away rather than the 2 that practice out of our local hospital. He believes she is the best locally. I trust him. She diagnosed me as soon as she saw me from the condition of my feet and the contractures in my hands & knees, but of course, she had me go through blood tests (turned out normal levels), xrays, and echo. She prescribed prednisone immediately, and in the 2 times that I have seen her since, prescribed methotrexate (MTX) and neurontin. No side effects yet. I am grateful for that.

 

An echocardiogram turned up hypertension, so I am seeing a cardiologist who performed an electrocardiograph in his office. Turned out pretty good, but in reading the echo himself, he sees some minor mitral valve leakage. He can't be sure if it is caused by the scleroderma or not, of course, unless he does some catheter-based procedure. He doesn't think it immediately necessary, and I am going to see him in 2 months, keeping him advised if I feel more fatigued or short of breath. My heart rate was 55bmp before the sclero, and it is now 80 and over.

 

There is new mercy for me every day, and with grace we will all be stronger and more healthy. I read on another post that happiness and pleasure is a path to successfully living with our physical struggles. Dennis Waitly said, "Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace and gratitude."

 

All seasons are beautiful for the person who carries happiness within.

 

Kindest regards,

HONEY

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Sam,

 

I am new to the Scleroderma diagnosis. But I was diagnosed with Antiphospholipid Syndrome (APS) six months ago. I find your question interesting. I have been having the same numbness and tingling at night and I was writing it off to the APS. APS can have multiple sclerosis (MS) like symptoms so I thought I was dropping things and getting clumsy due to that diagnosis. Thanks for your post, everyone has given me lots of food for thought.

 

One day at a time,

 

Seton

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