Is this Scleroderma? I’m so unwell

[Pat1ence]

I’m currently undergoing first line blood tests (ANA etc) my doctor suspects sjogrens/crest/scleroderma/lupus.

I need some advice. I have a severely disabled child, I need to feel better.

I’ve had Raynauds for years, getting worse year on year, I’m now at a point where it affects myost of my fingers, my toes and the heels of my feet. 14 years ago, my right ankle swelled up. Nobody could figure out why so toldme to wear compression socks and get on with it (I was only 19!) my ankle proceeded to swell, I have to sit with it elevated whenever I can, not spend too long on my feet etc. I’ve been back and forth to the doctors since but they never seemed overly concerned. Eventually, even at its slimmest (after resting) it never went back to normal. The skin between my toes is hard and rough and there’s a small lump on top of one of my toes. I get a lot of pain in this foot, ankle and leg.

The years passed and I threw myself into caring with both anklesswelling but the right much worse.

I had surgery for endometriosis in 2013. I never seemed to recover. It was a steady decline into a fog of fatigue. Extreme, crushing fatigue. This came to a head in 2015 when I seemed to ‘crash’. Almost overnight, after a VERY stressful time, my body gave up. Some symptoms that appeared include:

-weight loss

- hoarseness. My singing voice went.

- GERD

- Terrible nerve pain headaches

- high blood pressure

- dry eyes - can no longer wear contacts

- nausea

- abdominal bloating, severe. When I eat I look 6 months pregnant

- puffy hands on a morning. (This symptom has now gone and being replaced with pain)

- shoulder, upper back pain

- lower back pain

- hip pain (right hip, problem leg)

- pain that moves around

-shortness of breath, especially on exertion/lying down

- allergies. I seem to be allergic to everything I eat. Hayfever is much worse.

- chemical/smell sensitivity

- swollen eyelids, comes and goes

- puffy eyes, always

- recurrent UTIs

- racing heart

- hair loss and drying

- EXTREME fatigue

- blurred vision

- lump in throat

- dry cough

- scalp dermatitis (or something, it itches and flakes off in big clumps)

- skin rashes like pityriasis rosecae. I had a butterfly rash once in 2014.

- joint pain (not severe)

- muscle weakness

- muscle ‘burning’

- muscle twitches

- muscle loss/fat loss, from everywhere, including my face and hands

- loss of stamina. Completely.

I was diagnosed with ME/CFS and hashimotos and put on levothyroxine. I thought that would cure me, how wrong I was. My vitamin D was low, I thought megadosingg that would cure me, it didn’t.

I’m getting worse. I’ve always usually been better on a morning, worsening through the day but now I don’t even get good mornings. I feel utterly terrible all the time. On a ‘good’ day I’m 50% functional, if that. On a bad day it’s a write off.

My bones hurt. I can’t use my hands properly anymore, squeezing or screwing lids off is becoming increasingly difficult. Holding a pen is becoming difficult. Even spraying kitchen cleaner leaves my hands hurting, my muscles spamming. Typing this is causing me discomfort.

When I use any muscles they ache immediately. My face looks different, I’ve lost muscle or fat so wuicklynon my face. I’m stiff on a morning and can’t walk properly, as if my legs aren’t mine.

My cognitive function has declined. I can’t think straight or remember anything. Sometimes I can’t mentally or physically formulate words. My reaction times are slow, I struggle to understand things.

I get swollen throats a lot. Like now, I don’t know what I’ve done but my throat is so swollen I can barely swallow.

I developed bronchitis a month ago and was given inhalers and steroids. My doctor suspects asthma but the inhalers don’t seem to help. I’ve been short of breath for two years, steadily worsening along with everything else. I was always fobbed off with anxiety/allergies. When I lie down I can’t breathe.

I’m the worst I’ve ever been. I’m scared. My blood results will be ready soon, I had them done last week. In the meantime, I’m strugging more than ever to keep the house ticking over. I can’t do housework. I’m struggling to care for my disabled child, this breaks my heart.

I don’t know what to do. Does this sound like scleroderma? It certainly feels autoimmune. There are more symptoms but I can’t remember them. I’m so used to them they’ve become normal.

I’m so worried for mine and my child’s future. I’m too young for this.

[zenabb]

Do you have a rheumatologist?

[Pat1ence in reply to zenabb]

Not yet. I think my GP wanted to wait until these results were in. ANA is back and negative. Waiting on JO1 antibody?? And the rest. I bet they’ll all come back fine. Then what.

[Mylreaclairelee]

Really really feel for you. Good luck with the diagnosis. Remember the ANA doesnt always give a positive result you need a rhematologist to diagnose you. Hope you get an appt with one really quickly. Ask to see one urgently. Whereabouts are you located maybe near me. Sounds like you so desperately need help. Hugs xx

[Pat1ence in reply to Mylreaclairelee]

My GP wanted to wait until results were in. My ANA is back and negative. Waiting on JO1 antibody test, don’t even know what that is.. and a couple of others. I’m exhausted. Exhausted from feeling like this and nobody knowing why except ‘CFS’. I’m near Leeds in West Yorkshire. Also known as fedupsville.

[Duttie in reply to Pat1ence]

Hello, You need to be seen at the specialist centre at Chapel Allerton, part of ULTH. I think only 50% of people with Scleroderma are positive to ANA. You must get yourGP to refer you quickly. Best of Luck

[fairy56 in reply to Pat1ence]

I agree with Duttie, I am looked after by the specialist team at Chapel Allerton, they are very supportive

[AField]

My heart breaks for you, Pat1ence . I, too, am experiencing lots of the symptoms you've described and my blood tests came back "normal" - whatever that is.

My GP has given up on me, as the last time I went into the surgery (with my partner) he didn't even look me in the eye but instead told me I was experiencing "health anxiety" - hypochondria.

My symptoms come in waves, so some weeks I am better than others and my symptoms aren't so severe but others it's horrendous and the pain is unbearable. I don't want to be labelled but I do want to understand what's wrong so that I can make changes to help myself feel better.

Good luck to you. Hope you get some answers soon! Follow Duttie 's advice and seek help from the centre close to you. Please keep us updated on your progress.

Best wishes

[frillyhilly]

Hi, I'm so sorry to hear how unwell you are. I only have Raynaud's but I have a lot else wrong and am fortunate to have a very good NHS - GPs, hospital, community nurses.

Firstly, I agree you need to see a rhematologist - it just makes sense.

What struck me is that some of your symptoms sound so like mine. I caught a bad stomach upset some years ago and could not eat properly afterwards. I ran out of energy, weight dropped off me in "the wrong way", I looked awful. I was lucky that I had the "bug" because it gave a definite starting point - I got myself referred to a NHS dietician ( I told the Dr I couldn't eat anything without pain and was worried about my not getting a proper diet). I am now on a fairly limited diet b ut am so much better. It took a few months, but all the tiredness went, my weight came back, I looked "like me", miscellaneous aches and pains went (this is what the body does when it thinks you are "poisoning" it) and generally it helped all round - even my "hayfever" is better (I think I could think more clearly, but that just may have been due to lack of food).

There are two other things which occur to me from my own experience:

1) Could you be going into an early menopause - that certainly messes up my memory and brain and generally gives all sorts of odd things.

2) Your "ceasing up" and pain sound very like my Husband, who has just been diagnosed with severe arthritis.

I don't think these things will remove all your problems, but I know, oh too well, what happens when one condition builds on another. As I said I'm very lucky with my GPs.

I wish you all the best and hope you get the help you need quickly. Kindest Regards, N.

[Chocolate-e-clare]

Oh my - you poor dear. Forget the GP - book an appointment with a rheumatologist asap (if you can) and ask GP for referral. You have been suffering for too long. The rheumatologist can order the required tests. You may have several conditions going on. I wish you all the best in getting answers and starting to feel better.

[tanya1981]

Oh, dear Pat1ence, you've been all too patent and need to take some action for your health. Ro-1 antibody you're waiting for soul give indication if you're suffering with schongrens - another connective tissue related autoimmune desease.

A lot of your symptoms seem related to Scleroderma indeed so a visit to a good rheumatologist is an absolute must-do in your case.

Don't despair - once diagnosed and put on he right medication, your symptoms will certainly improve

m.youtube.com/playlist?list...

Have a look at some of the longer videos here - well worth getting a better understanding of scleroderma