Doctors not clued up: I went to my gp... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Doctors not clued up

Ninag75
Ninag75

I went to my gp as I discovered when I was five I have morphea sclareaderma on my right arm and now on my shin on my leg. Doctors weren't clued up then now 43 and getting alot more symptoms so went to gp today who had to Google what sclareaderma is she gave me amitryptiline solpadol and ibuprofen told to make appt with nurse for bloods to be done and told me she'll refer me to rhumatoligist which could take till autumn time before I get an appt through can anyone tell me if this is normal procedure or is there anything else I can do my stomach has ballooned right up I look about 8 mth pregnant and my feet are really sore and keep swelling also get very itchy all over my body...please any advice welcome x

5 Replies
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Hi Nina, unfortunately, as you know scleroderma is classed as a rare condition, so GPs are not fully aware of the symptoms, thankfully your GP has requested blood tests and referred you to a rheumatologist which is fairly common practice. If you have not heard about your appt by the middle of August go back to your GP and ask them to find out why. hope this helps, take care xxx

Ninag75
Ninag75
in reply to fairy56

Thanks for reply I've just got hole lot of things wrong with me and don't know if they are related to scleroderma or not and I felt as though my doctor wasn't listening to all the symptoms I was telling her I had wrong with me I get really bloated hard tummy I sometimes look 7/8 mth pregnant if I need a pee I cannot hold it in till I reach the toilet which is so embarrassing..my hands and feet ate all hard skin and find it difficult to swallow not all the time even things like yoghurt or juice I also get thumping headaches and my eyesight and hearing are getting really bad. I feel like no one is listening I also have thyroid trouble as well. Thanks again

Unfortunately I was delayed after my diagnosis of diffuse Scleroderma and I got to watch as my body worsened everyday. I knew which part was thickening because it always started with an itch that turned into a scratch marathon. You say you are itchy I hope that is a sign of something and not new morphea patches. I moved from size 8 to 10 1/2 in shoes as my feet I think are permanently swollen. I did get my legs and ankles to go down considerably by cutting back on salt as much as I could and began drinking 120 oz they suggest 64 oz or just under 2 liters per day. This lets your body know I am getting an good supply of liquid no need to hord or store it.

Amitriptyline is for nerve pain and antidepressant I read you should take it around 7-8pm as it makes you groggy in AM. Solpadol-Paracetamol is a pretty strong pain med. Codeine. Paracetamol is Tylenol. Ibuprofen is an NSAID non steroidal anti inflammatory probably for the swelling as it does very little to relieve body pain.

If you are not familiar with the Modified Rodnan skin score it is a test the Rheumatologist may do by pinching 17 areas of your skin to check for tightness and thickening. If you can pinch your skin still then fibrosis has not set in. A great place to practice is on the back of your hand, you should be able to pinch up a bit of skin and even move it around. wherever you are itching try this or have a friend help you and you can compare. With Morphea it will be in patches normally. Generalized morphea is rare but can be in many places on the body. My SSc snuck in so fast I never noticed until the test. Yours will be considerably different if it is hardening. With Localized scleroderma Morphea type (Plaque, superficial and generalized) none are life threatening but as you know can be a real pain. I think the initial treatment was pretty good. Treat the pain and discomfort and get you sent to the right Dr. Unfortunately Fall is a bit away. Since you already have the diagnosis of Morphea you may ask your Dr. about calcipotriol, Tacrolimus, If the Dr. says no you can get these over the counter I think, Topical steroids- hydrocortisone, clobetasol, betamethasone, clobetasol and mometasone. These are used to treat eczema and psoriasis and other skin problems. You should be able to get 2% hydrocortisone over the counter if your Dr. will not give you a Topical steroid.

Good thing to know is this is not life threatening you are on the right path but wish you could see Rheumatologist faster if nothing other than to relieve your anxiety and get you the correct prescription. Good Luck

Ninag75
Ninag75
in reply to Rking50

My shoe size has also I creased from a size 4 to now a 5/6 due to swelling feet also toe nails areally so hard to cut and also look disgusting discoloured I've got to paint them to hide them.

Rking50
Rking50
in reply to Ninag75

I found that filing works better than toenail clippers on my big toes. I do have to do it quite often and if I get lazy it may require more than 1 file :-) going through socks like crazy was a new thing for me so I had to start paying a lot of attention to them.

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