Funny changes are taking place..!!

[creditcrunchie]

Just returned from GP who is writing to my Rheumatologist but thought I would ask if anyone has come across similar symptoms. Had a bad back since december2015 and spent a fortune on physiotherapy but one of the effects is an inability to climb steps. GP tested reflexes which were none existing and I appear to have lost muscle in both thighs. GPS thinks possibly scleroderma related. I have pain in both buttocks.

[zenabb]

sorry, I don't know though I have scleroderma

[Irene55]

Before I managed to get to see a Rheumatologist I had lost so much muscle strength I struggled to climb the steps to my flat, I couldn't open bottles and hardly had the strength to hold a cup of tea. One day I looked at myself in the mirror and my arms and legs looked withered as if I was about 80. I was 50. When I actually got my diagnosis it was Scleroderma with Polymiositis overlap. This means that I got a milder form of each illness. Before I was diagnosed I thought I would be crippled and in a wheelchair. I thought I was dying. I had lost 5 kg of muscle mass but after a course of steroids this was reversed.

I had no strength in my thighs just like you say, I couldn't bend my legs when I walked, I used to see very old people striding along and I couldn't believe I could get back to that. I used to feel like a penguin walking because my legs didn't bend, it was almost impossible even to step onto a curb when crossing the road. I did once fall down in the street and couldn't stand up. Someone had to help me and kindly drove me home.

You need to ask the rheumatologist to check your Creatine Kinase for muscle. One thing about an overlap illness with Scleroderma, for me anyway, I do not have the typical Scleroderma signs, none of the face changes, my skin texture has changed but several doctors have told me that I have none of the visible signs. I have read a lot about Scleroderma and it is a horrible disease but I feel lucky.

I hope you get help soon, steroid treatment for the muscle problem will help, for me they were a wonder drug, even after the first day of treatment a lot of the pain had gone. It got to the stage with me that standing up and sitting down were very painful and difficult. Buttons were like knives, my hands were so painful.

Sorry for the long letter, I hope you get an answer soon. My GP had no idea about auto immune illnesses so I had it for a couple of years slowly deteriorating until the surgeon who did my carpel tunnel operation recognised the signs and referred me to the rheumatologist. Since then it has only been a positive experience.

Take care.

[72Spencer in reply to Irene55]

Hi Irene, I want to start by thanking you for your post. It seems we share the same illness, I also have scrleraderma overlapped with polymiositis. I'm 51 male and suffering from the same symptoms as yourself just not to the same extent yet. Anyways I don't have that much to say except I enjoyed your post and wanted to thank you.

[Irene55 in reply to 72Spencer]

I am glad you found my post helpful.

[dianekjs]

Hi, Irene55 gave you very good information. I was also going to suggest you ask to have your CK level checked and be checked for myositis. Also, do you know which scleroderma-associated antibody you test positive for, and if you've been tested for U1-RNP antibodies? Steroids may be contraindicated in diffuse scleroderma - it's important to know your antibody type (you would typically only be positive for one).

[Mylreaclairelee]

Wow that's me to a tee. If I climb steps or walk up even a very slight rise, my hips and buttocks ache and I run right out of petrol. Was about to mention this to the Royal Free when I go for my first ever visit in August. Would it be polymyositis overlap. This is what my NZ doctor thought. When i go I will suggest we do in depth testing for that. One of my results back over a year ago, under the ENA Antibodies bloods, the Ro52 antibodies test was positive which could suggest poly myositis I believe. Good luck with getting to the bottom of that i would love to hear how it goes

[Kingfisherblue]

I too are the same as you. Spent loads and getting worse. Tried physiotherapy, acupuncture, pain management and hypnosis. The back is constant. I am going for my reflexes on Thursday see how it goes. I too have pain in both buttocks and hips.

I am so fed up of the constant pain, we go through day in day out. i would love to wake up one day without pain, depression, tiredness not energy. The list goes on.

[creditcrunchie]

Thank you all for the information and advice. I have a appointment with my rheumatologist and will ask the questions you have furnished me with. I am still using the physio despite GP's advice that I was wasting my money as I do feel that the treatment seems to give me some relief. I keep trying random steps (much to the consternation of the home owners) but I am still flogging a dead horse as I am not able to get that push I need to elevate me upwards. Fingers crossed now I am armed with your info I will get some answers.

[SWEETpea10]

I have suffered same symptoms I have a walking frame for when I want to walk round any shops. I also have a electric wheel chair I haven't used it much as I have ranards and get so cold roll on spring and summer ',

I get so depressed from sweet pea.Keep your chin up xx