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Carolyn Manson

Weak shaky legs and feeling of severe fatigue.

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My name is Carolyn,


I am 64 years of age and was diagnosed with Scleroderma in 1999.

I have been walking very regularly and doing everything to keep myself abreast of my situation.

I experience slow stomach emptying and consequently slow bowel function.

I have an Implant for faecal incontinance and have lung and reflux problems along with Sjogrens and Raynauds.

I manage walking with numb feet but just recently I have been experiencing a weak jittery feeling and numbness in my

legs and bouts of severe fatigue

My legs are tingly and feel as if they will give way, walking takes so much concentration, I feel clumsy and ungainly.

My happy walks have changed, I now need to hold my husband's hand to remain steady.

I have done research and can't find anything similar in the Scleroderma sites.

Has anybody experienced similar symptoms?

I would appreciate any help,

Thank you, Carolyn.

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Hello Carolyn,


Welcome to the Forums, you have come to the right place for help and advice, I hope you keep reading and posting,


I am older than you, 68, and I have had the same sort of experiences as you. I know I have had Scleroderma since 1966 but only got a diagnosis in 2003 so I have had many years of damage to my internal organs with no treatment except occasional surgery.


I have not been able to walk very far for quite a number of years. One reason is the severe faecal incontinence I have. In fact I got started at the end of January down the road to an implant but the process has been interrupted by my developing a small bowel blockage the following week. I have been in and out of hospital over the past 6 weeks and will probably not be well enough to complete the SNS process until some time in April. I am looking forward to having some control but am prepared to find it doesn't help much. Keeping my fingers crossed.


Getting back to your walking problems, I have had funny feelings in my legs for years. Sometimes they feel as though they belong to somebody else. Sometimes I am sure they are going to give way under me. I just don't walk very much now, but who knows after the SNS is completed I might be able to.


As for fatigue, I have noticed a steep decline in my fitness in the last year and the fatigue is getting quite severe. I had to stop going to the gym for workouts about 6 months ago it wasn't worth it because I would have to sleep for at least 2 hours when I got home and then the day was almost gone and I hadn't been able to do anything else all day. Now I do as much as I can around the house and garden and accept that is my lot.


The best news I have is that my Raynauds has gone - pouff - just gone!! One day I realised I wasn't getting cold when I expected to and when I though about it realised that I hadn't been cold for quite a while. That happened about 2 years ago and it started in 1966 so I have had it for a while. I still take the meds that I had been taking, I am afraid to stop in case the Raynauds comes back.


So yes I have had similar experiences to yours but can't say I have any answers, except to adjust to a new set of limitations.


Warm Hugs to you



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Hi Carolyn,


Welcome to these friendly and helpful forums!


I'm sorry to hear about the problems from which you've been suffering, especially the weakness in your legs which must be very distressing and frustrating as it means you can't enjoy your walks as you did before.


Sadly, fatigue is an unpleasant symptom that does affect many of our members. I did suffer with this before I was diagnosed and started taking my medication, so I can empathise with you as I felt very tired, washed out, poorly and most unlike my normal, bouncy self! Although my joints ache quite often, I've not experienced the feeling you describe in my legs and feet, so can't advise from my own experience. However, I've included links to our medical pages on Neurological Involvement and Neuropathy which can sometimes produce the symptoms you describe and also to an earlier thread on Exhaustion and weak legs and arms which I hope you'll find helpful and informative. I expect some more of our members will be able to give you some first hand advice.


I'm assuming that the rheumatologist who diagnosed you is a Scleroderma specialist. We do recommend that you consult one if possible as dealing with this complex disease can sometimes be beyond the capability of the average rheumatologist.


I'm very pleased that you've found our forums and joined our community and I'm looking forward to reading more of your posts.


Kind regards,

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I once had numb leg; it was a neuro. problem as multiple sclerosis (MS) is also an auto immune problem.


Maybe you need to be referred to a neurologist.

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Hello Carolyn


Welcome to the forums and well done on living with scleroderma for so long! I could go on endlessly about fatigue but won't as I'm too tired! It is the bane of my life, along with chronic pain, and I just think how much more I could do without it, and without the pain, mobility problems and heart failure of course!


I can't say about the walking difficulties but would not be surprised if scleroderma was the cause. I do know that fatigue makes everything even harder including walking but it would be worth getting it checked out as no one here can say for sure what is the cause.


Take care and keep posting, it's always encouraging when someone has had scleroderma as long as you have.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Carolyn,


I'm hoping that you've seen a doctor for your new symptoms, by now. If you have, what did you find out? Here are some warm hugs for you.



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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