Scleroderma help

[alibon]

Hi, ANA showed Scleroderma Limited and I'm about to visit Consultant next week. Just wondering what to expect if anyone can help? So far, I'm so tired all the time, can't seem to have any grip with my hands, suffer with ankles and knees and totally dread any steps or stairs. Few weeks ago I woke up not being able to breath in without immense pain which lasted for two days, thought I was going to die, it was terrible. Just wanting to know if anyone has any advise please?

[alibon]

sorry, forgot about the Raynauds, dreading winter but can't go in the fridge or freezer either!

[Mars72174 in reply to alibon]

Alibon, I'may so sorry to hear this. I'll do my best to explain as much as I can. People with this form of the disease have thick, tight, or hard skin on the hands or feet, and may or may not include the face. Thickening of skin usually happens over time. When checked over time patients with limited scleroderma usually have few changes and very little, even over many years. It can affect the lungs, esophagus and intestines. It can also cause issues with the heart and raise blood pressure, which in turn creates a problem with the oxygen flowing into the lungs. This is also known as the diffusion. It occurs during exertion. Please follow doctor's orders and make sure they are well versed in scleroderma. It can be treated, the symptoms, separately. It will help to slow progression down immensely. I hope this helps and if you have questions and I can help in any way, please let me know.

[Mars72174 in reply to alibon]

I just saw your Raynaud's post! This is a horrible nightmare. Mine is so bad I'm losing my toenails from the lack of circulation and even bedsheets hurt when they touch my feet. I feel your pain. These are the symptoms shared in both diffuse and limited scleroderma:

Raynaud Phenomenon. This occurs in about 90 percent of patients with systemic sclerosis. • Heartburn and other esophagus problems (particularly trouble swallowing foods). • Skin sores are common, primarily on the fingers. Some patients develop sores on the skin of the wrists, elbows, or ankles. • Abdominal grumblings that can include feeling “full” after eating only a small of amount of food, “bloating” of the belly after eating, swelling of the abdomen, particularly after eating, constipation, or diarrhea. • About 10–15 percent of patients may develop severe lung fibrosis, leading to shortness of breath. • About 10–20 percent of patients may develop pulmonary hypertension, which is high blood pressure in the arteries that supply the lungs.

[marilynmcl in reply to alibon]

For fridge and freezer ....wear gloves! Stop looking at the negatives and start on what you can do to help yourself. Wrap up warmly for winter. Hot water bottles and blanky's on the couch at night. Scarf around face and neck when outside or even inside if too cold. Nothing to dread on visit to rheumatologist ....mine is lovely and very helpful. Be positive and it will help. Wishing you well, x

[LucyJean]

Hello there, It is hard to say exactly how each Consultant will approach your management but hopefully they will listen carefully to the symptoms you have been having. They will do a range of blood tests to help their diagnoses. They will probably want to check your lung and heart function. They will then determine what medications are best suited to keep you as well as possible and manage the symptoms you are describing. Ask lots of questions! Try and get as much information as you want and can handle about the condition and the medications. Take a friend or family member as two heads are definitely better than one, especially when your own is spinning from being newly diagnosed and having lots of information given to you (especially hard when you feel unwell!) Remember that this is the beginning and things are going to improve now you are going to have treatment.

Come on this site and ask the community, and everyone will endeavour to help you. Do not go looking on the internet at scary sites. Keep to reputable NHS and SRUK sites.

All my best

Lucy

[marilynmcl]

Oh,....and not everybody gets extreme symptoms....I have systemic sclerosis and it is mainly my internal organs affected so far.....some skin symptoms but nothing too bad at all....my lungs are damaged but have medications to help.....repeat....be positive pet.

[alibon]

Hi, thanks everyone for your advice, it put my mind at ease. I've had the appointment now and it wasn't too bad at all. I was there for around 3 hours and had all sorts of scans and tests. As I live in Leeds the hospital that I attend is under the Scleroderma Research Programme and carries out clinical trials which I have signed up to (all voluntary) I'll be monitored by the hospital every 3 months for the next 5 years and hopefully it'll help toward improving people's lives and who knows, maybe a cure! (fingers crossed) The consultation seemed a bit surreal to be honest and I only half listened! There was so much going on and I didn't get to ask most of the questions that I went in armed with. I have a GP appointment next week so I'll put the questions to him, hopefully he'll be able to help.

Thank you again everyone for your advice and good wishes. I hope everyone is as well as can be. I keep logging in here and reading all the posts and it is a great help. If I have any questions this will be the first place I visit and if anyone wants to ask me anything, I'm here