Vasculitis UK

I am going mad with my symptoms! Help

Hi everyone! Not posted on here for a while. Going to try and keep this as short as possible. I really need your help as I am literally at my wits end now with my health to the point where I have contemplated suicide as a "way out". I know it sounds weak, however I am struggling really bad and have literally NO control of my life anymore. I worry so much that I am deemed a hypochrondriac or psychiatric, despite having physical problems that are visible via tests etc!!

I am 28, before 2010 I was a completely normal 24 year old who was loving life and living life. I was on the career ladder, modelled part-time and had a great social life. All I had "wrong" was asthma that was well controlled. It all started when I had a random ring rash all over me in 2010 that dermatologists said was pityriasis rosea and then i had a swollen left knee and pain. The rash looked like lupus or psoriasis, burned like hell and was all over me apart from face and hands. After that it has been a domino effect with my health and things have progessively become worse, I lost my fulltime employment and had to go part-time, all aspects of my life have been affected social, relationships, financial, mental etc. My quality of life has not been good at all and I struggle with a lot of normal "daily activities". My GP surgery is very busy and has about 7000 patients for 3 GP's. The "care" at my GP surgery has worsened over the past year and I have not been managed well or monitored and pretty much just get given pills and told to go away until next time! I am now at the stage that due to my sick leave I am facing termination of employment. I studied hard to get the job I have now (I.T), they have made lots of reasonable adjustments but I just can't manage anymore. I struggle even meeting a friend for an hour or two just for a coffee never mind anything else! I have seen a few specialists, some were great, some not so great! I now feel these days that I am looked upon as a hypochondriac or a malingerer when that is not the case! I want to get on with my life and reach all the "normal" milestones for people my age and start feeling some sort of well being. I will try to explain as full as possible below and keep it short as possible (it is so complex sorry).

-received H1N1 swine flu vaccine in 2009 and didn't feel "right" afterwards

-had a total thyroidectomy for a large goiter in 2013 that was full of abnormal cells, had 1 parathyroid removed too as it had an adenoma and I had high levels of parathyroid hormone.

-diagnosed with fibromyalgia in March 2013 for widespread chronic pain that had been present for over a year

- Asthma, rhinitis, nasal polyps. Skin allergies that have left scarring.

- Also have interstital cystitis & urethral stricture (diagnosed 2012 by urologist) ALWAYS have inflammatory cells in my urine without infection , raynaud's (2012) and asthma (1998)! Never ever got to the bottom of what has caused all my chronic health problems.

- I catch about 6 infections a year or more and ALWAYS need antibiotics. Have been hospitalised twice for infections that went systemic. This has worsened over the past 2 years. Never had any further immunological testing, all immunoglobulins are normal! GP has never investigated any further with regards to my immune system.

-Absorption problems with vitamin D and B12 and swing a lot from being deficient to being normal, despite being prescribed supplements.


Duloxetine 40mg (prescribed by rheumatologist for fibro & depression) was on 60mg but felt like I had complete apathy on 60mg and it wasn't helping my pain.

Amytrtiptaline 50mg (prescribed by rheumy for fibro, to help sleep at night) makes me drowsy but couldn't sleep without it

Pregabalin 300mg - was on this for nearly 3 years, and weaned off this year as I felt it wasn't helping and was too potent to continue taking when it was doing me no good!!!

On various painkillers, baclofen for when my neck gets bad, dihydrocodiene for when my general pain becomes unbearable!

Instillagel and flavoxate with catheter administration tip for bladder issues.

At 28, these symptoms below are scary!

New symptoms that have worsened over the past year:

- SEVERE stiff neck that contorts my head and I cannot turn my head left or right for about 2 weeks then it subsides again

-Fatigue - can be so bad that I am only awake for 3 to 4 hours per day

-Problems with temperature and sometimes sweating profusely then being the complete opposite

-throat "collapsing" sometimes when talking or walking or doing physio, sometimes even when eating

-muscle twitching & spams, in calves, face, hands and feet - docs have witnessed this

-muscle atrophy in neck & lower leg muscles

-general "fibro" pain which hasn't responded well to ANY of the meds I have been given over the past 3 years. Pain interferes with my daily activities, I can only work part-time and struggle even with that. Interferes with my hobbies & social life & love life!

- Since coming off pregabalin I have noticed I have terrible restless legs that start at about 8pm each night, my legs become so heavy to the point where going upstairs can be impossible, my legs will then twitch/fasiculations and a creeping sensation and I can be up for hours dealing with that during the night!! At 28 it is a pretty scary symptom to be having!!

-Numbness on left side of body mainly on head, neck and foot!

It has taken over 20 months to stabilize my TSH and I experienced many swinging period of hyperthyroid & hypothyroid states that were quite extreme. Sometimes I wonder what the long term affect of being hyperthyroid for so long has done to my nerves.

Seen a neurologist a few weeks ago, who was completely obnoxious. Did her assessment of me, said the only thing she was concerned about was the numbness and I had showed her a video of my facial twitching. She said she thought it was "hemifacial spasm". I then asked if this could be linked to the twitching of my legs, hands etc! Hands get so bad sometimes that I drop things and it can be so noticeable that people will say "Gosh your hand is shaking". I had an MRI of my neck and brain with contrast and it showed NOTHING!! which made me feel sick as i thought is this all in my head? Am I going mad??? The neurologist said she felt it was all linked to the "fibromyalgia", however myself and my family are not happy being told this anymore? I also know others with fibro and most of them are over the age of 40 and do not have twitching etc.

My questions and if anybody can answer I would be SO grateful. I do not want to sound like a hypochondriac or a nutter who has been googling symptoms, but lets face it, when you are scared of what is happening to your once normal body, you become desperate?!

I have been tested for rheumatoid arthritis, inflammatory arthritis, lyme disease, syphillis & HIV (yes!!!), normal calcium and magnesium levels, lupus etc etc...........

Things I HAVEN't been tested for that I wonder I MAY have, and what on earth do I say to my GP regarding these without sounding like I am insane/hypochrondriac?........

- Young onset parkinsons? - since MRI etc cannot diagnose this and I have severe restless legs, twitching, throat collapsing etc

- Peripheral neuropathy - obviously have had a lot of endocrine problems that were long standing and wonder if there has been damage done and this could explain all the "neurological" symptoms. Never been tested.

- Underlying kidney problem? - Could I have an underlying kidney problem that could maybe explain the inflammatory/white cells in my urine, without the infection? Also the flares of the interstitial cystitis.

- Possible vasculitis? i.e. Churg Strauss syndrome as this can cause the white cells in urine, asthma, chronic allergies, nasal polyps (Which I have), scarring of skin etc?

Lots of people say fibromyalgia fizzles out or gets better in time - I seem to be getting worse and this has been 4 years of symptoms now? I also don't respond to ANY of the treatments I have been given. I have had acupuncture etc, tried exercise, physio etc etc NOTHING helps.

If any of you have ANY idea what is going on or if you experience something similar please get in touch? I don't want people thinking I am nuts!

34 Replies

I have alerted John Mills chairman of VUK, to your post cocobella, do not despair yet, we will help if we possibly can, John will get back to you this evening, he is just in the middle of a Skype meeting at the moment about vasculitis, 4th Skype about vasculitis, in one week, but he will get back to you ..

best wishes



Thanks so much Susan x


If anyone can help John can you will also get lots of support from us all on health unlocked. Good luck & think positive.


Thanks so much Valwood x


Hi cocabella,

I have Churg Strauss Syndrome and from your symptoms it is definitely the asthma and nasal polyps that rings strong signals with me. In addition the unique blood test marker that is unique to CSS is the level of Eosinophils which, if > 10% of White Blood Count, then that is an almost certain diagnosis of CSS.

So what has your blood tests shown for % Eosinophils?

I suggest you look at the Mayo Clinic definition of CSS shown here with the Six Criteria, and if you have 4 out of 6 then CSS is highly likely.

Also I cannot see any reference to steroid treatment or an immunosuppresant treatment, which is the standard treatment for vasculitis. Have you been prescribed either of these to reduce your symptoms, since I couldn't see any reference to those?

Last point ... I don't think that you should be interfacing with your GP with this wide range of complex issues. Instead you should be referred to a vasculitis specialist that you can access. Where do you live?

Best wishes & lots of help from this group ... Jonty


Hi Jonty,

Thanks so much for your informed response. I have never been referred to a vasculitis specialist unfortunately. Also never been given immunosuppressant, did have steroids a few times for SEVERE throat infections that would not clear and I was hospitalised for. I personally have thought it was Churg Strauss for a while. Can I ask, once you were diagnosed and put on treatment, did you feel a lot better?? did you notice a big difference?

Not sure what the eosonphil count was either, I am seeing my GP on Monday and can ask about this?

Thanks again for your brilliant response.




Re .."- Asthma, rhinitis, nasal polyps. Skin allergies that have left scarring."

- that sounds very much like CSS symptoms, but they may overlap with other immune system diseases.

Re ... "once you were diagnosed and put on treatment, did you feel a lot better?? did you notice a big difference? "

- YES ... I was started on 30 mg Prednisolone (I was a mild case & many start on 60mg), plus an immunosuppresant called Mycophenolate, and within a few days all my symptoms started to reduce considerably.

- it is now just over 2 years since my dx and I'm now down to 10mg Prednisolone and 150mg Azathioprine which is a steroid-sparing immunosuppressant. I still have a few symptoms but they are gradually reducing as the immunosuppressant continues to calm down the immune system ... it can be quite a long process, and according to the data, getting into remission can take 18 to 24 mths. So you have to be patient!

The main issue is that you need to get a vasculitis specialist (who has seen other CSS cases & so is familiar with the complexity of such diseases) to check your symptoms against the Six Criteria (Mayo Clinic), and also the blood results for Eosisonphils (VERY important for CSS).

I hope you can reach a correct dx soon and start the appropriate treatment .. best wishes ... Jonty


Hi Cocobella, as Jonty says, you need someone who really knows their stuff about vasculitis and related diseases and that person is almost certainly not going to be a GP.

Can you tell me in a PM where you live & where you have been treated to date or if you prefer, just email me

You obviously have a complex series of auto-immune problems which may be all related. The problems in stabilising the TSH could be associated with a pituitary disorder, which can happen in vasculitis. Again I agree with Jonty, one might suspect Churg Strauss and it is odd that nobody has prescribed steroids or an immune suppressing drug. But what is most important is to get a proper diagnosis, rather than trying remedies on a "suck it & see basis". If you live in the wrong place, you might have to travel some way initially to see a really good doctor, but it might transform your life, so definitely worthwhile.

We are on your side & we certainly don't think you are a hypochondriac!!

Very best - John


Thanks so much John, about to private message you.


Really have nothing to add to what's been said here. Everyone has already touched on the things that came to my mind when I saw your post. But I do want to offer you my encouragement. I know how hard it is to keep going from doctor to doctor and feel that you're getting nowhere. But you must not give up. Keep pushing forward til you find the doctor who will listen, take you seriously, and help you solve this mystery. You're young, and still have a wonderful life ahead of you. No matter how dark things appear right now, it could all turn around tomorrow. Hugs.


Thanks so much itsjusmeli, really appreciate your kind words. x


You're very welcome! Pulling for you!


I have wegeners granulamatosis for over 3 years and have not into remission yet. I had ME from 1991 to 2000 so I know the pain you are going through. just hang on in there I am sure you will get better but as the other replies have said you need more than a GP to help you. Sending you a big tight hug if you are in the hampshire area let me know and I will visit you. x

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Thanks so much for your lovely response. I am unfortunately in Scotland. :( lol. Wow I have never even heard of Wegeners granulomatosis. Just checked it out and it does share quite a few of my symptoms. Again this is something I am going to mention to my GP and I think I will demand a ANCA blood test etc! Thanks so much again, I will update on here when I finally get to the bottom of it.x


Good morning Cocobella,

You mentioned that you will demand an ANCA blood test, but you should be aware that these tests are often not very conclusive.

Although Churg Strauss Syndrome is classed as an ANCA Associated Vasculitis (AAV) disease, only about 50% of cases are actually ANCA +ve. I and many others have been diagnosed with CSS but are ANCA -ve, so beware of what an ANCA test may suggest.

Let us know how you get on since we are all rooting for you!

Best wishes ... Jonty

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Hi Jonty, thanks for this information, it is really useful. I will see what the GP thinks and ultimately when you look at the 6 main diagnostic criteria, I have 5 the only thing I don't have or have never had confirmed is a chest xray. So I am unsure if I have any lung problems. I do have asthma and get breathless a lot. Getting through that last winter was hell and I was always wheezing and fingers would turn blue. Anyway, I feel as though I am going on. Seeing GP on Monday and can update you all.

Thanks again. Completely blown away by the kind folk on here.



Hang in there!!

I went through years of being made to feel like I was going crazy, told it was all in my head etc. was eventually diagnosed at 33 with Churg Strauss.

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Oh wow!!! Sorry you had to go through that!! Fingers crossed I get to the bottom of it soon. xx


Hi cocobella,

I just wanted to echo what everyone else has been saying. You are obviously not mad and hang on in there! So many of us with complex diseases have had a similar journey to you.

As regards a diagnosis I just wondered if you had mouth ulcers as well. If you do them Behçet's Syndrome may be a possibility as it can cause problems with the urethra etc. Please do get in touch with John and hopefully you can manage to see an " expert " who will be able to help.

Best wishes


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Thanks so much for your response and kind words. It really helps. I have looked at behcets and the only thing is I don't get mouth ulcers very often. I will keep pushing to get a proper diagnosis.

Thanks so much.


Hi cocobella,

Have just read that you live in Scotland, I am a fellow Scots as well. If I can help in any way please don't hesitate to PM me. Ultimately I had to go outside Scotland to get a diagnosis, these diseases are so rare that Dr's here don't have the same exposure to them as bigger countries.

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Hiya, yes I am on the East coast. That is shocking and also not shocking you had to go outside Scotland. 😢 I think our nhs is really overstretched and unless you are in immediate danger I.e. Acutely ill you are just left to fend for yourself and "roll" with it. What area are you in? I am curious to know if we are in same health board lol x


I stay in Central Scotland in the Forth Valley Health Board area. I have possible Behcets Syndrome which is notoriously difficult to diagnose. It was not so much the lack of diagnosis that upset me as the suggestion that my illness was " significantly psychological " when the Consultant couldn't figure it all out. In many ways that was the impetus I needed to go further afield.

I work for the NHS and believe the Scottish NHS is wonderful in many ways but it doesn't always get it right!


Wow, totally blown away by the lovely, indepth and kind responses you have all left me. I posted in a few forums and everyone has been so nice and actually understand what I am going through. I will post here in a few weeks when hopefully I am a bit more further forwards.




Dear Coco - I am sorry to come late to your post. I was in hospital until Monday and am very behind on HU and don't yet have a diagnosis of vasculitis so I have tended not to use this community as much as others until very recently

It is pretty hard dealing with all this at the age of 52 let alone 28. Although in lots of ways I am enthused for starting life and career all over as my youngest son finished his last school day ever yesterday so the parenting project can change now to free me up to move and be a full time and ambitious artist again for the next lap of my life. If only I can get my health and energy on track for this purpose and don't just fade away from fatigue and unwellness right under the GPs and rheumatologist's noses.

The only positive thing about your age, as opposed to mine, is that you stand a better chance of full recovery when your autoimmune disease (and this does sound very much like an autoimmune disease) is finally picked up on and treated properly - as hopefully it will be with John and others here supporting you.

I too live in Scotland and also have three gps serving a population of around 7 thousand - who also don't know what to do with me and imply I'm over anxious and a bit of a hypochondriac sometimes.

I also have thyroid disease (Hashimoto's) so am with you in spirit on many fronts. Even when I was your age I had health problems which, looking back, probably related to my autoimmunty. I really hope you can get a firm leg up to diagnosis and treatment and don't have to get to the point of feeling suicidal with all this ever again now.

Twitchy x

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Awww Twitchy your post has literally touched me. Thank you. It is so comforting to hear others have been through the same sort of situation. With regards to GPs I think it is becoming dangerous where I am and so many mistakes are being made. I have ended up hospitalised twice for infections due to the gp not acting quick enough. Also could be due to not being diagnosed properly too. Sometimes with my age they look at me and say aw you're young you will be fine and fibeomyalgia fizzles out. I am usually left flabbergasted and thinking so this is a good quality of life, permanently off sick, permanent debilitating symptoms and permanently p'eed off lol. Thanks for taking the time to respond and I hope you're feeling better after your time in hospital. Also nice to hear you're creative too. Art keeps me happy and I tend to turn to it when I get down. Xxx


I meant every word Cocobella. I hate the thought of you becoming that desperate and hope the responses you've had here have given you the confidence to keep fighting your corner - you are not a hypochondriac - far from it! Good for you too re art/ creativity keeping you above water.

I feel exactly the same way as you about my GPs. In fact the reason I've ended up in hospital twice over the past five weeks has been because they are just too complacent. They aren't bad doctors but just don't know enough about or see enough of the rarer autoimmune diseases to know what on earth to do with me. They keep saying that they can only deal with one thing at a time and I'm too multisystem for them. They get frustrated by my situation too and I can understand how annoying it must be having a patient like me. However at least they aren't telling me I have Fibro because of my high inflammatory markers and diagnosis of Hashimoto's and RA.

It is my rheumatologist who is so disappointing because he only seems to know about RA really and yet our area health board pay for his services and so I can't get to see anyone else. I might have to PM you to find out which area of Scotland to avoid because we are planning to move away at the end of the summer. X


If you are anywhere near Glasgow they're setting up a new vasculitis clinic at GRI which might be of help. Personally, I've had so much help from the Scottish NHS I'd never even consider going abroad, or private for that matter.

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Thank you Orsen-Trapp. I think it depends what healthboard you are in within Scotland and also having a good GP is key. My Gp was amazing until he moved away last year. Since then the service at my GP surgery has been awful and so many discrepancies with my care.


Oddly enough I am in two health boards as my treatment is entirely consultant led. GPS were utterly useless so it was emergency admissions that got my lovely consultants scratching their heads! Fortunately highland and Glasgow boards seem to work well together and most of my results and records can be seen on both sets of computers. Which board are you in?

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Dear cocobella (love the name)

Can I add to your long list, of symptoms, bloating, constipation (that drives you absolutely mad), in fact all manor of 'gut' problems drive you crazy, don't they? I think you have covered, just about, everything else-di you mention athletes foot- and all the other fungal 'things'? Now what I'm about to say might shock you or, very well, make you think/feel that I don't care....Let me assure you that I DO care, very much and it is precisely for this reason that I put the following.

How long have you been like this-doesn't matter-you are alive, every time you feel in pain, can't 'go', have a 'thumping' head (that refuses to yield to any medication), cramp in every soddin' thing and feel like you are already dead....You are, in fact, ALIVE- yes, despite it all, in spite of it all ALIVE, in pain, miserable, maybe even crying, but ALIVE babe! How long did 'they' give you? Months? weeks, days, hours-like me! Yes you did read that right....HOURS-not even expected to last the night! That was eighteen years ago, no really. I have had a Kidney Transplant, two years ago (in July) following four years on dialysis. Do I complain? Actually NO because I'm ALIVE! Now without being (too) rude here-what's YOUR beef? Sorry to be so apparently 'uncaring' but honestly Coco! As 'they' used to say 'Carry On Number One'.

I do hope that you take, the above, in the spirit that it is intended-please don't think that I'm slagging you off/upsetting you for the fun of it. Sorry if you are now crying babe, I didn't mean any harm.

Sorry Coco.



hi Cocobella, I have wg/gpa and fibro. I will write back to you in the next few days. I share many of your symptoms. have you also joined fibroaction uk? it's another HU community.




thanks so much, sorry to hear about your diagnosis. Would be great to discuss it all further with you though.

Kind Regards



Hi Coco, I've just stumbled upon this page after suffering with an undiagnosed illness since Aug 2015. My Go is convinced I have Vasculitis and I hope to see someone in reumatology at the Nuffield in Oxford asap. I have been having facial ticks, leg and foot pain, skin discoloration and lots of bruising. Veins that are verypprominent


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