Diagnosed with Scleroderma but am having really bad muscle pains to the point where I’m in bed 4days!!! Hopefully u can relate?

[Dc012885]

I was diagnosed with scleroderma about year n a half now.... I’m on cellcept 500 4 times a day!!! In the beginning it was everything real tight n achy plus fatigue but everything eventually started to get better in that area. Lately I tell My rheumatologist something else is going on I’m super weak sometimes I feel great n go to bed next day feel like a bus hit me!!! Now it’s getting to the point I’m in bed5 days cant stand straight it’s hard to hold my head up on barely will talk I’m so weak !!! He did test my muscle enzymes and MI2 came back positive but he never mentions it again.... Could I have myositis? Not to mention I’m just losing fat off my legs for no reason pls if anyone can help I’d appreciate it!!!

[MEW53]

Dc012885,

When I started to get Ill in 2014 I found everything ached and my head drooped very badly as I couldn’t look in front of me cos my muscles lost power. I became very weak, very tired and lost 5 stone in weight within a few months and got diagnosed with Myositis with a Scleroderma overlap. Your problems sound very similar to mine so maybe, worth mentioning this to your consultant and getting an appointment ASAP ( call the secretary and give her an update on your worsened symptoms).

The good news for me is that I was bed bound for a year cos I was so bad but Cellcept and steroids have really helped me. My head can look forward now and my legs work now and I can walk with a stick, I’ve put a stone back on so I’m a good weight now.

Versus Arthritis are very helpful (previously Arthritis Research) for advice.

Hope you feel better soon, I’m sure there is light at the end of the tunnel for.

Take care

[Vtoria in reply to MEW53]

Please be careful with steroid I know they help keeping us mobile, however they damage bones so badly you break when some just looks at you it seems..😊

[MEW53 in reply to Vtoria]

Thanks Vitoria I understand what you say, in 2014 I was taking 35mg a day but I take 5mg as a maintenance dose now, I would prefer not to take steroids but with all the things that go on with my autoimmune system they help me alongside other drugs.

I take calcium tablets twice a day to help.

Strangely enough I fell over 13 weeks ago and fractured the top of my shoulder on a concrete step, it has healed nicely, awaiting a bone density scan, had the last one 5 years when I was diagnosed with Myositis with a Scleroderma overlap.

[Vtoria in reply to MEW53]

This is why I said be extra careful with the steroids, I agree it is a magic pill because it does help so much. However the outcome from even small dosing I think now, years later, was it worth it. I was involved in a horrible accident in Oct of 18, I broke every bone that the salt belt and shoulder strap touched. A 17 yr old kid decided his marijuana smoking was more important than watching traffic, he hit us doing 75 mph while we and miles of cars on the interstate ahead of us were stopped in road construction. I was in the ICU for 7 days before moved to a regular room. Then I got to live in skilled nursing facilities so I could learn to walk with a broken pelvis. I broke my sternum, 6 ribs, compression fracture in my back, my pelvis was broken in 5 places and today my pelvis still is not healing because of the severe osteoporosis I now have. My scerladoma, Crest, reynaud has caused pulmonary hypertension, cataracts which I've had surgery on my right eye, my liver is in end stage cirrhosis therefore medications for the scerladoma, I cant take, my lips are getting thin, my teeth are breaking at the gum line I cant get implants due to not much bone for them. I'm at the point now where all I can do is try to control the pain while keeping some what functioning so I can enjoy my little grandson and I'm only 57 yrs old. It sucks to be this young but my body is failing me. I usually dont respond to posts, not do I post however, if I can just throw out some warnings from experiences that can possiblity help someone else I will. I feel for each and everyone of you on this site, this is a no fun painful slow killer of a disease and its heartbreaking so many doctor's just dont get it. There's no cure, but they can do something to keep us more comfortable, if they would just listen or care. Good luck to all, hang in there as best you can and know your not alone when your on this site.

[tanya1981 in reply to Vtoria]

Vitoria,

So sorry to hear what you’ve been through... sounds like hell at such an early age! How long have you had CREST for? Is there anything that’s done with it (I. E. Taking too much steroids) that has caused your symptoms lately? Hope you stay strong and manage to see your grandson grow

[Vtoria in reply to tanya1981]

Thank you so much for caring & the positive support. Hope you week is a good one, rest, take things easy, feel less pain.

[Patricia2015 in reply to MEW53]

Hi MEW53!

Can you tell me what test was diagnostic for Myositis with a Scleroderma overlap? Was that the anti-Ku antibody?

[MEW53 in reply to Patricia2015]

Hi Patricia2015,

I was in hospital for 2 months in 2014 and I had many tests, MRI scans, PET scan, various CT scans, endoscopies, video fluoroscopy, DEXA scan and I was positive for an anti-KU antibody test.

Just had a 6 monthly check this week with my consultant rheumatologist, he was pleased with me and said I was fairly stable at the moment

MEW53😀

[Patricia2015 in reply to MEW53]

So glad to hear your recent tests were well and you are fairly stable now!

Can you tell me which of the tests confirmed your overlap syndrome?

Asking because I tested anti-Ku positive as well and lot of other non-specific antibodies for SLE en APS. I have muscle atrophy too but more distally and only given Plaquenil. My feet turned to very slender pes cavus feet. Besides of the many changes in my feet I cannot walk anymore on regular shoes and need a wheelchair for longer distances.

[MEW53 in reply to Patricia2015]

Hi Patricia2015,

I can’t really remember exactly what specific tests were done cos at the time as an inpatient there was so much going on.

The PET scan gave them lots of clues and I had lots of blood tests daily while I was in hospital and I have monthly bloods done, these include: FBC, ESR, RB1,RB4, ESR.

My CK markers were very high at the time I was in hospital and the doctors were very concerned about that.

I avoid people who are ill or have infections and especially avoid people with chicken pox and shingles.

I have problems eating as I have dysphagia and my hands are curled up, so I think this gave the medics some good clues.

Sorry I can’t be more specific, I did keep copious notes at the time, but they are not to hand easily.

[Sanmateogirl107]

ms, fibro, immune specialist lately start there. pain specialist. i have crest, fibro, chronic fatigue i sleep nap 12 noon i wake up the next day. no joke! 13 hrs straight! raynaud's disease. so yea i relate well. tell your doctor i want a referal to see a immune specialist now! do not wait. the sooner you start treatment the better you will feel PROBIOTICS, TUMERICK DEFEND AGAINST AUTO IMMUNE DISEASE. love julie

[Bec9680]

I have systemic scleroderma and mine got really bad before I actually found the right doctor. Now I’m on long term antibiotics & doing so much better! There are only certain doctors holistic/md doing tests to find out what your trigger is for scleroderma like bacteria which is a lot of times the case or virus. Please go to roadback.org to try & find a doctor near you. Also go to inspire.com type AP therapy Antibiotic therapy so many are seeing excellent results from this. Actually takes care of the problem instead of just masking the pain with toxic pharmaceuticals.

[jingsdog]

Hi Bec. In G.B. doctors are not prescribing antibiotics so much for patients as the long term effects are becoming ineffective for a lot of diseases and illnesses. Also the rivers are becoming polluted with these antibiotics from human waste which the water purification plants cannot remove before releasing the 'purified' water back into the rivers. I have systemic sclerosis which has damaged my lungs, my joints are swollen and painful ..secondary Raynauds which had me hospitalised for 3 days on a drip to allow blood flow to my blackened fingers. So, the meds I take are mycophenolate my rheumatologist took me off steroids in case they caused further damage to my organs. I lost a lot of weight and was so ill before they finally diagnosed what was wrong with me...my doctor told me recently that she had me down as 'on the way out'...dying in other words and-to be honest- I don't think she was far wrong.

I was also told that a possible trigger for the syst. sclerosis may have been triggered by severe stress ...my husband had been seriously ill and almost died with sepsis and heart problems ...all his organs were shutting down, but, thankfully he recovered well. He had been so ill for 2 yrs and I was on my own taking care of him and the toll on my own health was very stressful. It was the year after he recovered that I fell ill. So, maybe stress could be one of the factors in this...but so much on this disease is unknown.

Anyway, hope all of you keep your spirits up and good luck going forward to all of you. x

[Dc012885]

I want to say thank u to everyone who took the time to read my post and give some honest and heartfelt advice!!! I’m new to this so didn’t realize anyone responded to me until now so my apologies!!! A lot of u sound like u have way more knowledge about this disease unfortunately it was probably due to this horrible experience that u all are going threw!!! This is really all new to me like I said went from a normal life gave birth and I swear woke up the next day and all these problems started so I guess I’m still in denial somehow hoping that my dr. got it all wrong!!! I’m trying not to cry reading this but each day that passes I feel like I’m slowly losing who I am and even what I look like!! It’s a hard pill to swallow... I have 2beautiful children ages 12 and 3 and have no idea what I’m going threw they don’t know if I’ll wake up n be Mommy that’s in bed so tired n weak or Mommy that plays n takes care of the house n goes to work!!! It’s getting worse in a sense..,, Yes my skin is not tight swollen n painful where I’m stiff n uncomfortable but now my bad days that maybe were 2 day 2x’s a week are almost a few day every week n each time it lasts longer!!! I can barely talk sit up n even keep my head up when I get like that that my body aches n I’m extremely weak!!! I went to see rheum 3months ago n told him what’s going on n he always says well u shouldn’t feel like that and then will try n send me on my way with more cellcept or something else!!! I have to remind him that a few months ago I demanded he take muscle enzyme test n it came back positive for MI2 I think that’s it which is a form a Myositis I believe so then he’ll say well last year I had an EMG done not came back ok but..... that was a year ago n I wasn’t really having a problem like this until the past few months I’m losing muscle from my legs but I’m wasn’t losing weight I wasn’t exercising so y is my legs getting so thin? He said well we can do another EMG but omg was that painful I really didn’t want to go that route but if I have to I will!!!I mean it’s hard to get up out the car off the couch it takes extra effort to walk up steps and to even lift my arms to do my hair!!! Uggghhh it’s really been hard and very frustrating because I started to get better now this and I feel like my dr. either thinks I’m just a big exaggerater or he doesn’t care.... I did try n get a second opinion at Unniversity of Pennsylvania in Philadelphia Pennsylvania but when I got there the dr read all my notes out the computer n asked y was I there that everything my dr has done so far seems appropriate so what’s the problem I think I was so upset I walked out cried so much n got myself so sick in bed!!! I just want answers and someone that’s willing to go to any lengths to help me!!! Idk I’m just so frustrated n don’t understand the y and how of all this!!! Sorry for another long post but I’m glad I can get it out to people who understand what I’m going threw!!! I really appreciate everyone’s advice and kind words it means a lot!!! And to anyone who may be going threw worse I probably have no right to be complaining but we can get threw this!!! Especially with everyone’s knowledge and advice on finding better ways to cope we can help each other ... Continue to be who u are and never stop fighting there is hope🙏XOXOXO

[Jak62]

Hi all, it’s so hard reading this, and all the suffering so many of you endure. I have CREST and my own range of symptoms which are scary and annoying but not as pervasive as most of you who share here. I’m not sure if I’m just going to be lucky or if worse symptoms are heading my way. I take low dose naltrexone which has helped with reflux.

I have also heard a lot about the Wahls Protocol, a stringent dietary approach. I haven’t tried this yet but have read some amazing stories of auto-immune recovery, including that of Dr Wahls herself. It might be worth checking this out online - inspiring and hopeful stuff.

Good luck.