Anyone continually being diagnosed with more and more auto-immune diseases?

[larsonsmum]

I have been diagnosed over a lengthy period of time with Mixed Connective Tissue Disease, Morphea Scleroderma, Raynaud's Phenomenon, Fibromyalgia & Osteoarthritis, and was just told yesterday my latest flare-up might be Polymyalgia Rheumatica! It's 'normal' to just keep getting more and more auto-immune diseases/rheumatology issues I was told by the GP I saw, (which I've read too,actually). How many of you have unfortunately just kept getting more and more conditions? Also, is there anyone who has morphea scleroderma which has gone on to become full-blown scleroderma, affecting organs, etc?

[Anteater]

Hi yes, I started off with Raynauds then Limited Scleroderma (affecting my bowel and swallowing) , Underactive Thyroid, Lichen Sclerosus, Lichen Planus, Sjorgens syndrome,(Chronic Fatique & Migrains, which are all connected). I am sure something else will be involved soon - I just deal with each thing as it happens.

Oh the fun of having a Chronic Medical Condition (I think not) !!!!!

[LynnCox]

I was diagnosed with auto-immune underactive thyroid nearly 3 years ago. I have suffered from symptoms of Raynaud's for as long as I can remember but diagnosis was only confirmed last April. A few weeks later (after blood tests) I was diagnosed with limited scleroderma. My sister has Graves disease (auto-immune overactive thyroid) and has just been confirmed to have Raynaud's. I have wondered why I have more than one auto-immune condition and like Anteater am just dealing with one thing at a time.

[larsonsmum]

Thanks Anteater and LynnCox.

Anteater, I was also told Lichen Sclerosis by Dermatologist, which he even said he was "100% sure" of, then on the next visit he said it wasn't that! He then did a skin biopsy and said "it was 100% Scleroderma" and my Gynae Skin Clinic Consultant also did a skin biopsy but it was inconclusive...so you are always left wondering/distrusting!

Since all my medical issues began about 38 years ago following a bout of Glandular Fever at age 16, I have slowly lost almost all faith/trust in medical people, as I've had several reasons to over all this time, when errors have been made, communication has failed between GPs and Hospitals liaising etc, etc.

LynnCox, you will be aware that many people on here have several conditions, and you will read that when you're looking up for info here and there, but the strange thing is the medical profession's reluctance to actually say that. A young GP I saw the other day did, but that's very unusual.

For a very long time I'd to remind them of all the conditions I had every time I went to see someone at my surgery. Then they'd almost seem surprised, as though they never looked near my notes. Most of them were also quite adamant the various illnesses were not linked, and kept telling me it was just coincidence I had 4/5 auto-immune/rheumatology issues, but that attitude has thankfully changed in the last year or so for some reason.

Now, I just have to work on convincing everyone else - who all think I look like there is nothing wrong with me - that I do have several ailments!

No, it's not easy being us!

[Anteater in reply to larsonsmum]

Hey, we have a silent illness - we look well on the outside but suffer inside... auto immune conditions are draining - I feel like rubbish everyday but carry on best I can. xx

[zenabb in reply to larsonsmum]

Research is what's needed for professionals to know what they are talking about. Unfortunately, because our condition is considered rare drugs firms are not interested in funding research into it. It is left to the Raynaud and Scleroderma Association to fund raise, us to give donations and interested professionals. I tried to fund raise locally but I am not supported; it is always for heart, cancer and now Altsheimer.

Apart from this important point, I have noticed that I may have a condition that lasts a few months or a few years and then it goes, to come back later or not.

[blubabe in reply to larsonsmum]

Hi Larsonsmum. I came across your post today even thou it is 4 years old! But it made me shout out Snap! I too am diganosed with mctd and I gave up going to my Rheumy a year ago as she was unsympathetic to my symptoms and said it's part of my illness. I sometimes think if I accidentally cut my finger the docs would Oh it's coz she has mctd. I try to stay healthy and even gave up smoking last Stopoctober (Yeh me ☺) I knew smoking didn't help my condition but another part of my condition made me a bag of nerves but after a traumatic split from my hubby I have a much healthier view on life . I take care of myself and worry less what other people think of me. Alot of posts on here talk about the physical effects of our condition but let's not forget a healthy CALM mind can help with the physical struggles we go through every day. I wish u health and hope it's not 4 years before you read this 😂

[Barnclown]

Yes, me too, to all your posts to date.

I'm 57 and have spent my life conscientiously managing a collection of ongoing conditions, all of which now turn out to be expressions of significant autoimmune & connective tissue issues: finally, I am now being treated by a really good NHS rheumatologist, but it took decades running around to different depts of different hospitals with each "condition" being treated individually by consultants in various specialities. Each condition was "normal" in a GP's opinion until I went back to show GP that condition continuing and getting worse. The conditions seemed to have what I thought of as a "membrane" connection (I was fairly innocent and just came up with this idea) In the case of some conditions, the GP managed to get me on meds that helped a bit for a while before things got so bad I had to see a consultant or go to A&E. And meanwhile all those years I was rubbing prescription steroids in various bits of me, having operations, taking antibiotics repeatedly etc etc and hyper conscientiously lifestyle managing my conditions, hoping nutrition, exercise, meditation or whatever would be what could help get me out of this cycle of poor health. I always felt it was all about me looking after myself badly, cause the medical experts were saying it was all normal and there was nothing underlying it all.

Conditions like: blood blister-like mouth lesions they took 15 years to say are probably angina bullosahaemorraghica, a Chondrosarcoma eventually requiring amputation of a finger, lichen sclerosus they "think" but won't biopsy because the worst site is my fused clitoris, piles bad enough in my 30s to require surgery although i had no good reason for them (no constipation, great diet etc), plus recurrent secondary infections in upper GI tract/chest, urinary infections, raynauds + what they "think" is erythromelalgia, skin reactions, hypermobility joint and muscle troubles, pulp lesions etc etc. So, finally the raynauds and foot joint pain got bad enough and I've ended up with a vvv autoimmune experienced rheumy who spent 2 hours taking my full history and getting lots of tests done, and says the underlying conditions are due to lupus and connective tissue syndromes and has started me on plaquenil. But I still have to see other specialists to manage all the secondary conditions.

Well, when my 89 yr old mother heard some of the rheumy's blood tests were for lupus, she told me I'd been diagnosed with lupus by a gp when I was a toddler and again as a teen. But my mother had hoped it had gone away. What can I say? It's great to know this now! But would it have helped to know earlier? Maybe no one would've taken an old diagnosis seriously, as so much autoimmune stuff seems to result in symptoms & conditions the drs say are "normal", ie: things anyone gets. And, in my experience, so much can be really unpleasant while being more or less manageable if you're conscientious or just lucky enough to be able to minimise effects. And when things flare up really badly/dangerously the nhs is pretty good at sorting you out with strong /ops etc that can damp things down enough to sort of get you through. All, it seems, in my case anyway, without morphing into diagnosis of an underlying autoimmune condition...until now 50+years on

Sorry to be so long-winded, but this ? And your posts mean a lot to me. I guess this lupus/connective tissue diagnosis/treatment means I feel sort of relieved, but that's maybe a sort of acceptance. My less than great health is not going to change, it seems. I'm going to have to go on liaising with drs & therapists etc as much as ever. Basically, I'm trying to get my head round this whole thing. I've always been a keep calm and carry on, Pollyanna, glass 1/2 full person, but that doesn't mean I don't have to work hard at it and have my share of really low phases. Anyway, now I'm hoping these new strong meds I'm on will damp things down/take the edge off as many of my symptoms as poss. But who knows. I feel lucky things aren't even worse than they are but who knows what the chest/heart/nerve/blood tests the rheumy had done will show.

. And I feel big time for everyone who is going through this sort of life-experience: including all of you who have posted re larsonsmum's.

[Anteater in reply to Barnclown]

Hi Barnclown, sounds like you have really been through it over the years - I think that when you were diagnosed with Lupus it wasnt understood as much as it is now. I attend the Royal Free Hospital in Hampstead which is the top hosp in europe for Scleroderma etc. The specialist nurses travel all round the country teaching other units .... With regards to the Lichen Sclerosus it would be nice if they could refer you to a specialists who is interested in vulva conditions. I was referred within the Royal Free to Professor xxxxx (dont think I can name the dr) who specialising in the vulva and I had lots of problems with the sclerosus causing me to split and am very scarred in that area. But with his help and help of the specialists nurse I am learning to live with it and they are keeping their eye on me. xx I hope someone helps you because I know how sore and irritating it can be xx

[Barnclown]

Thanks anteater.

Re LS : Yes, several years ago my really great lady GP referred me to our local vulva clinic. It took a year or so to get the LS diagnosis, and that involved one op under full anaesthetic to take biopsies which all turned out to be a total waste of time cause the wouldn't biopsy the worst affected area due to political correctness. Anyway, I did get a good LS management routine together back then and have kept the condition reasonably controlled ever since, but it's a complicated routine, as you'll know well. As far as I can make out, even LS experts are not clear on what causes LS etc etc. When my lupus/connective tissue diagnosis turned up I did begin to wonder if LS could be related to scleroderma and even mistaken for it...but nothing seems to have been fully researched

Anyway: I very much agree with you when you posted that people who see us can imagine we're fine when actually we really aren't. Every day is a struggle to cope especially with the fatigue. And if the weariness gets out of hand, all the autoimmune stuff flares up, for me anyway.

And: yes! To what larsonsmum posted re the frustration of having to remind drs about our conditions etc!

Take care all

[larsonsmum]

Thanks for your replies on my same post on two different sections, barnclown. You have had a lot to cope with over they years. I'm just totally convinced there certainly is a connection between all these various diseases, and it clearly just seems that some medics have some difficulty acknowledging that for whatever reason. I've been told by the Lupus/Soft Tissue nurse I saw that the MCTD is like Lupus, and can be regarded as such really. Also been told, as I said, that the more you have the more you get, so if some medics believe that, why can't they enlighten their colleagues? Nowadays with so many sites like this and so much info, (including academic info), on the internet a lot of us are far more up on it all than many of the medical profession. We hear so often that we shouldn't be googling this, that and the ohter or we will all thing we have everything, but the sad thing is - many of us are forced to research these issues ourselves, due to getting nowhere with the 'experts'. There have also been quite a few times I've gone armed with a list of problems to surgery, (as many articled toell you to do, for goodness sake!), and been told by the GP I'm seeing that they can only deal with one issue per consultation....when they are clearly all connected!! Am I meant to make 5/6 different appointments, when all the complaints are very clearly linked??? Barnclown, thank you, and I will send you a private message, too, XXX.

[Barnclown in reply to larsonsmum]

Thanks larsonsmum: I'm so grateful to you for posting your ? And getting this discussion going. You're amongst the few I've found, since my diagnosis earlier this year, who sounds as if she has a history more like mine - right down to the illness as a teen. You've had and have a lot on your plate health-wise: sounds as if you've learned how to negotiate all this stuff effectively. But I bet it's hard, eg poly. M. R is no picnic. I have a close friend who coped with it for several years - now seems to have got over it : Happily!

Re what got my mix of autoimmune conditions going: There is a strong

Chance it was to do with my mother being on DES for 9 months while pregnant with me in 1953. This proven carcinogenic oestrogen based drug was then used to stop miscarriages, but is now a morning after contraceptive. It caused significant problems for babies like me. A definitive link between this & conditions like lupus has not been established scientifically, but there is interest and who knows we may see to see something clarified.

Meanwhile, I try not to let all this take over my life, but learning about you and others in our situation does help me a lot

Thanks again, and take care

[Ediesgirl in reply to Barnclown]

Dear Barnclown

Hi, I am new to this site. I hope you are okay as I write this.

I was interested in your note re. your Mum taking DES when pregnant and then your mention of the morning after pill. I took that once and am interested in anything known about this possible link.

Take care.

[twiddle665 in reply to Ediesgirl]

My mother too the DES drug while pregnant and I have Scleroderma and cdc.gov had info on DES and I am on facebook and there is a DES info site. I think it has something to do with auto immune diseases.

[uknlv]

I too have had many issues with doctors and diagnosis, and getting someone to tell you what is wrong. And finally get the right treatment!

I was diagnosed with Lichen Sclerosis first, although it took about 2 years and getting referred to a different Dermotologist to finally get someone to say that was what was wrong. At my appts I would be told that it was definetly LS and although the biopsy was inconclusive, which was per a letter I received down to the lab messing up the sample, she was positive it was LS and no further biopsy was needed. I was missing a lot of work due to the LS and was under management for this, and the letters she would send my employer, which happened to be the NHS, said that she was not sure if it was LS or not. It was soooo frustrating to say the least. I would ask her in follow ups why she said these things in the letter, but she would just brush past it and ask me when I was going to lose some weight. She was so focused on my weight, even though when I asked her if I did get thin would the LS go away and she said no it wouldnt affect it but I would feel better. bleh I asked my GP to refer me to someone else after that. I was under treament by the Dermatologist for 5 years, and most really didnt know that much about LS and just said use the Dermovate that is all you can do. I ended up losing my job due to all of this, which was very upsetting and caused a major spiral into depression. I was finally referred to a Dermatologist that works in conjuction with the Connective Tissue Rheumatologist and found that I have been treating my LS incorrectly for the last 6 years now, I was so angry. I could of been saved a lot of pain, suffering and depression, as well as potentially kept my job for longer. Oh well

I started having more and more trouble with my hands in July of last year, the Raynaud's although not diagnosed by anyone, I knew what it was as a friend of mine has the same condition. I went to my GP as my fingers were tight and sore all the time and I thought I had arthritis as it runs in my family. He sent me to the Rheumatologist and she asked me to list all my symptoms even if I didnt think they were related, and lo and behold they all connected to a connective tissue disorder. They thought Lupus at first, sent me for tests and came back with Scleroderma. It was good to finally get a diagnosis, and in some cases an explination of things. But it still is very difficult, it seems that we are a bunch of lab rats that the doctors try things on and hope for the best. If it works then wow weren't they clever to suggest such things, but if not then you get told, well Scleroderma is difficult to control.

One thing I find difficult to cope with is that having been on this site for awhile and another site that is American/European/Australian is that there really are quite a few people with Scleroderma and other connective tissue diseases, and it is hard to accept the answer 'We know so little about this disease as it is so rare' from the doctors. It doesn't seem so rare to me, as there are many of us with it. I know it is different in each person, but I imagine you can say that for any illness, everyone reacts differently to different things.

Sorry for the book on my part, this one just hit a nerve, and I wish we could get better care and treatment and things diagnosed sooner. I dont like being a guinea pig, and I want to not be sick and tired all the time. It is true that this is an invisible disease and I do get tired of trying to explain to people what I have and how it affects me, and it isn't that I am fat and lazy that I can't do things and am tired all the time. Well rant off, thanks for listening 8)

[zenabb]

WE need to encourage research. Professionals are getting more interested thanks to the work of the Raynaud and Scleroderma Association. Drug firms are not interested because our condition is considered rare, but the more we know the more people come out of the woodwork. As one professor told us at a lecture recently, what is found out now will be useful for people after us. There is no cure yet. And it has only been relatively recently recognised so few know the long term development of Raynaud and Scleroderma or whether it is hereditary or not. We need to know more through research.

[graygirl1 in reply to zenabb]

Hello Zanab, I understand February is RSA awareness month but I have not seen any information about what takes place and where. Any ideas?

Thanks

Graygirl1

[Anteater]

To all, isnt nice to have a moan and groan sometimes - the medical profession really do drive you made and we have to fight for almost everything - but it does help when you know there are others in the same boat xxxx

[larsonsmum]

Zenabb, thanks for your great contributions, as I certainly relate entirely to the 'no interest' both as far as telling people about how we suffer, and as far as fundraising goes, yet endless support for people with other illnesses, and no shortage of donations to the 5/6 best known health disease charities.

That does irk me, and I nearly came to blows over that last week with a good friend, but we're good friends, so we rose above it! I was actually saying something to her that many people find hard to hear - I appreciate cancer and heart disease are two awful illnesses, and have lost count of those I've know who have had them - and survived, or otherwise , but the care, attention and concern these patients get from the medical profession, their family, friends, colleagues, and almost anyone else who hears of their plight is incredible, compared to may other sufferers of long term Chronic Illnesses.

Likewise, everyone I know rushes to support Macmillan, Marie Curie, British Heart Foundation, (I support them myself), but they won't even take a minute to learn about other rare diseases, dismissing it often with, "oh, never heard of that" before moving swiftly on to tell you about their grandchildren, their holiday, their now car, or their whatever!

Anteater - yes, indeed it is good to get grievances off our chests, with those who understand, and are enduring the same battles!

[CWats in reply to larsonsmum]

I had a similar conversation with my husband! I understand the importance of awareness and fundraising for breast cancer, etc, but what about the rest of us?!?

I personally know quite a few people who have had cancer and survived (including my mother who has had 4 different cancers starting at the age of 27 with breast cancer) she has thankfully survived them all due to diligence and treatment. She was recently diagnosed with Lupus. Not many people know what it is There is a lot of information on MS, MD, etc but you say Scleroderma and the response is "huh?"

This needs to change.

I was 1st diagnosed with raynauds at 18 and lots of handwashing (hot and cold water) the doctor insisted my hands were stained from picking berries something I hadn't done in years! At 27 I was diagnosed with CREST syndrome an acronym for 5 different illnesses. I was given 7 years to live. I admittedly laughed it off and called it the "toothpaste disease." I was working full-time had 2 young daughters and was going through a divorce. I simply didn't have time to be sick especially with an illness even the doctor didn't know much about!

Throughout the years my shortness of breath, heartburn and raynauds worsened. I moved from the midwest to southern CA hoping to help with at least the Raynauds, it didn't work. After years of passing out at work due to severe sudden drops of blood pressure (my blood pressure is naturally abnormally low i.e. last week at an appt it was 96/54). I was put through many tests from psychological, neurological even drug testing! The only 'drug" I was taking was the nifedipine prescribed for my raynauds and the occassional Tums for heartburn! I have always led healthy lifestyle and never smoked or did drugs and only had a rare drink.

I was told I was depressed and prescribed antidepressants which I never filled. On the contrary I was quite happy with the exception of not knowing why I kept passing out.

I never connected my shortness of breath to the scleroderma. Years later and a move to the east coast I was diagnosed with PAH (pulmonary arterial hypertension) and put on oxygen. I am now going through the testing to be put on a lung transplant list.

I will be 48 next month and continue to fight this disease with the support of my amazing (2nd) husband.

I have been blessed to see my daughters grow up, go to college, get married and I now have 4 beautiful grandchildren!

Things have certainly never been easy, I stlll hear "but you don't look sick!" Even though I am in a wheelchair with oxygen, people think I'm faking. If only it was that simple! Parents always "shush" their children when they ask about my oxygen. I always say it's alright and just tell them it helps me breathe.

I now see a rheumatologist, a pulmonary specialist, a transplant dr, a gastroenterologist, an ear nose and throat dr (also have chronic sinusitus and otosclerosis), a gp, gyn, renal dr, and get my blood drawn weekly. I have also been diagnosed with sjdgorens (sp?), polycystic ovary disease and primary biliary cirrohsis. AUGH!

Thanks for "listening."

[cpns in reply to CWats]

All that and still a smile at the end.

I hope things begin to look up for you

[luluswitch in reply to CWats]

Hi there

I have just joined this site and am so glad I have. As far back as 13/14 yrs I had slight problems mostly with my toes never seeming to get full blood flow. Never bothered about it much.Then 6yrs ago, after lots of visits to the doctors, I was diagnosed with PBC. Only really suffered with nausea and unbelievable tiredness. Acouple of years later, my toes started playing up again but so did my fingers and was told Reynauds. Joint pains were awful. Sent to a rheumatologist who first thought I had definite RA, but then later decided my RA was due to the PBC!! Had xrays which showed definite osteoarthritis and my hands were starting to become very painful, numb and then tingly. Sent for nerve conduction tests and confirmed Carpal Tunnel Syndrome in both hands. Just had my left hand operated on and am in more pain than before!! I am also diagnosed with Sjogrens Syndrome and unfortunately COPD.

I stopped smoking, havent bothered with alcohol much, twice in 7 yrs only, and I wish I had never gone to the docs 6yrs ago!!!!!

It is hard managing all these conditions especially as lots of meds that could be used, cant be used, due to the PBC.

I decided to smile every day at anyone who looked at me do something nice for someone, anyone, every day, and thank god that i am here still,after an acute hepatic attack which could have been the end of me.

It wasn't, and no matter what gets thrown at me I will smile.

Thank you for reading

[2Old in reply to luluswitch]

I am curious as to what meds you were on since the beginning. I am also wondering if it is RA, even though the one doc said no.

[uknlv]

I definetly think it helps to be able to 'talk' to people that understand what you are going through. Well it definetly helps me and I am so glad I found this site. I was told by my Sclero specialist about the site actually, and then told to only look at this site, which of course I ignored and looked around as well. But I do agree with them for some of it, because I have found sometimes reading some of the other sites I have found and some of the things people have I start to think about whether or not I am going to get these problems, then I get depressed when I do develop one of them. But then I tell myself to snap out of it, and just take it as it comes. Can't do anything about it anyways, and as for what people think I am finally learning that I don't give a flying (bleep) what they think anymore and if they are truely my friends then they will understand that I need to cancel things at the last minute and that I got to take things day to day sometimes, and if they don' t then I suppose I don't need them in my life anyways. More room for all the good peeps, like my fellow sufferers!! 8)

[Pipsmum]

I've read all your posts with . Thank you for bringing this up.

I'm 54 and have had joint/muscle problems since my teens. In recent years I've had 7 surgeries:2 endometrial ablations, followed by emergency hysterectomy, then various bladder and bowel surgeries. I think the trauma of the hysterectomy triggered my Sjogren's Syndrome. I already had osteo-arthritis, asthma and bronchiectasis. In the past couple of years I've been diagnosed with Raynauds, and hypermobile hips and knees.

Life is never boring when you have doctor appointments to keep - and doctors to educate!

Sending you all best wishes.

[2Old in reply to Pipsmum]

500-1,000 mg B2 and 15,000 mcg of sublingual Methylcobalamin B12 might help. (Don't Pffsht, try it)

[Stotts]

I can tell you my experience. I was diagnosed with Celiac Disease, then Scleroderma, Lupus and now Multiple Sclerosis. I understand these are all auto immune diseases. Seems like there is a relation with them all. Hope you are getting great care.

[2Old in reply to Stotts]

Stotts,

B12 deficiency is a BIG link.

[nettie545]

I learned, quite by accident, the other day, that all those mentioned by you above, fall under the heading of 'Vasculitis' which is an Autoimmune 'cluster' of diseases, all linked. I had Behcets and was looking up to see any latest news about it and discovered this. If you look it up you will see the connection. It's all to do with blood vessels, so all connected. I was quite pleased, as over the years I have had so many strange symptoms that Doctors have been baffled about. I'm grateful, after having read what Behcets can actually do to you, that I haven't had the worst ones though! Look it up, I'm sure you'll find some answers for yourself, as I did. I am just trusting God in all this and pray for all of us on this site.

[overnighthearingloss]

After you have gathered a few badges the rest seem to lose their ability to shock. At least that is what I have found is true with me.

When you meet a different doctor for the first time though its quite funny seeing them turn greyer than us as they really don't know where to start. I tend to think that its all related anyway but not everyone gets the same symptoms. Or the same symptoms all the time. On the front page of any of my clinic notes there is quite a long list of my various 'badges'. I tend to think you either feel well or you don't. And if you don't it doesn't really matter how many badges you have just as long as something is done to alleviate the current problem.

Lets just hope that clever people get to grips with this soon.

[Hidden]

I read this through this morning. I had thought that I didn't really belong here because I had my rheumatology appointment yesterday and once again was left with more uncertainty than clarity. But now I'm thinking, having read these stories, that this is the place for me!

I have Rheumatoid Arthritis, diagnosed two years ago but have had it longer than that - by at least a year. I am also hypothyroid - the autoimmune kind too. As well I have been struggling with dry eyes, icy cold legs and feet (toes whitening more and more) and a numb sensation in my legs - which I'm told is not neuropathy. And bite-like spots on my face which come and go and my GP thinks are autoimmune uticaria.

My Rheumy was very unsure what's going on as my active RA is confined presently to my feet and ankles so I don't qualify for the more expensive biologic drugs yet - and haven't tolerated the two first line disease modifying drugs. So am now back on Hydroxichloraquine (Plaquenil) to "buy us some time" to see what emerges.

I asked him whether the other symptoms could be secondary Raynauds or Sjogrens and he said these were possible but unlikely with my ANA being negative. So I feel in limbo again - stuck on anti inflammatory Naproxen and Amitriptyline for nerve pain. But perhaps one day things will become clearer. Meanwhile I try to explain autoimmunity to as many as will listen - not easy but I totally agree about cancer, heart disease etc - have lost parents , family and friends to these too. I think autoimmune diseases need to come together more under one heading rather than RA being under the heading of muscoskelital - if it was grouped with Lupus, Crohns, Raynauds and Scleroderma plus MS and many other rarer ones then we might be able to put more pressure on society to support us better and on pharma companies to research new drugs.

[graygirl1 in reply to Hidden]

Hi there,

The problem with all these conditions which come under Autoimmune disorder is that they are hard to diagnose as they mimic other illnesses. I was a nurse and now believe that all those years of lethargy, weight problems, dry itchy eyes and drowsiness at work due to insomnia, could be explained away as due to "the job". The unsociable hours and the hard physical side of the job was blamed. I cannot count how many times I visited my doctor within ten years complaining of back and hips and shoulder pains, tiredness, skin rash, skin irritation, insomnia to this day, but he too put it down to my job, "its one of those things that go with the territory of being a nurse"

Another reason we are not further along in the research of this illness is because it attacks mainly women and mainly women in Europe. Black women in Europe are more prone this miserable condition but it is not known why as the same cannot be said about outside Europe. May be something in the environment, who knows? The one thing I do know is that I had autoimmune disorder in my twenties, but only picked up by chance by a bright young Locum when my old GP went on a holiday. More and more women are reporting the illness and not putting it down to being "just" tired and stressed so lets hope more and more research is done and we can continue to encourage and share with fellow sufferers on this forum which I call "The RSA Family"

Have a great weekend All.

Graygirl1 (up late, can't sleep, what's new?)

[zenabb]

Contact the Raynaud and Scleroderma association on thir websitte.

[2Old]

O.k., I did not read the replies, so if I repeat, sorry.

I think it all stems from vitamin deficiencies, particularly B12. Unfortunately, once your body starts reacting to the deficiency, it's too late. Some blame Candida, but, to me, that's just the new boogeyman, and probably more of a symptom itself.

I had a host of problems that were cured by B12. (Google Chris Kresser B12). I had headaches that were lessened with B12, and pretty much eliminated with B2. I was diagnosed with asthma about a year ago because I had a cough (and shortness of breath) . I blame it on Amlodipine which I took for HBP. Around May, I was nauseous for about three weeks, threw up a lot, and could only eat frozen waffles without anything on them. Right after that, my labia started itching (going to confirm Lichen Sclerosus this week because the symptoms took a while, and had to wait 1 1/2 months for an appointment!), I started losing weight (diagnosed with Hyperactive Thyroid), and my asthma got worse (doctor thinks it's the thyroid).

So, I believe it was vitamin deficiency which sent me down the long road of one disease after another. I don't really think the body just attacks itself. I think they haven't found the cause. The kingdom was lost, and all for want of a nail. Vitamin deficiency is the shoe, the nail is the reason for the deficiency.

[christef]

I have sjogrens, reynards, Lichens Schlerosis, heart problems, asthma, arthritis, and other issues. Enough. 

[Dtascone]

I was also surprised that I not only have diffuse scleroderma but snorens, Raynauds, SIBO, myositis, and pulmonary artery hypertension.