Long - Sorry and Hello All :)

Welcome Greetings and Introductions
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Big hello to all and apology in advance for long post! (please forgive me)

About 15yrs ago, I started to have severe migraines and felt unwell the day after any physical exercise.
I had polycystic ovaries and symptoms were put down to this. I was a busy single mum with my own business at the time - which helped me cope with bad days (as I set my own schedule). After trying for a few years to get any treatment that helped for polycystic ovaries and failing - I gave up and just got on with things.

My overall health was seemingly robust however and apart from the above - nothing unusual.
I suddenly felt very, very ill one day whilst decorating my home, couldn't breathe, sweating, muscle pains etc and didn't know why. It turned out to be an allergic reaction to the paint. Then I got hay fever for the first time in my life.
I developed asthma like symptoms after being near someone wearing strong perfume. Yet the asthma meds/inhaler did not help. Again, turned out to be an allergic reaction. I became more and more ill - swelling ankles/feet knees etc. I also had shoulder/neck pain and a large pad of swelling at the base of my neck all the time.
Eventually I went to my GP - who put me on really strong antihistamines. This helped a lot for a year...until I became allergic to the antihistamines!

I was plagued now by feelings of having 'glass under my skin' sometimes weeks before getting a rash that looked like blisters (I now know this was psoriasis) and visited my gp during a nasty attack of this to be told it was shingles - no treatment offered.

During a holiday in Spain, I suddenly swelled up around all my joints. was in severe pain with my joints and surrounding muscles and got flu like symptoms. I went to a dr there who really didn't speak great English and he prescribed Arcoxia (an antinflammatory. I really didn't know why or what he thought was wrong with me but I took them and felt better than I had in years in just a few days! When I got back, went to my gp who didn't question it and put me on them. Again, I was pretty good for near 10 months... before starting to get allergic reactions every time I took the Arcoxia.

GP tried other antiinflammatories but nothing worked - so treatment just stopped. I tried eating well/alternative therapies etc and acupuncture with massage helped but I was far from back to normal.

I got achy ribs - only way I can describe it. Then pain in the muscles connected to them. Within a short time I was getting severe pain in my right side. GP thought it was appendicitis. Was put on strong antibiotics - which did make me feel better at the times, sent for tests - nothing showed up. Pains in side turned to severe muscle spasms which became so painful - I passed out one day when they came on suddenly and terrified my son. Was told that I had irritable bowel - which I couldn't belive but tried all meds suggested/diet changes etc. made no difference.

Finally sent to hospital after this continued and I also had a high temperature for over 6 weeks (still had ankle swelling/knee pain) GP decided I had a stomach issue. Had a load of tests (ended up with severe muscle spasms in legs back and side by now. Nothing found to be a stomach issue - so was referred to a neurologist and my gp did tests for cancer as he thought my immune system was going crazy due to this but tests came back negative - then gp decided I had MS. My toe nails have just startd to peel off the nail bed as soon as they grow now too.

I was scared stiff. Waited 9mnths to see a neurologist who poked me a bit asked me to raise my arms above my head and then declared that there was no need to do an MRI - said I had Fibromyalgia and suggested counseling...
I was mortified, they were acting like I was a hypochondriac... I refused counseling and no other treatment was offered. I found myself living on over the counter pain killers which I was becoming immune too...
I was in such a state, not sleeping, in pain etc. when a pal offered me a Tramadol. I took it as I was desperate and it helped me so much. I went back to the GP and told him and he has prescribed them for two years now.
However, it helped with pain and spasms but swelling knee, back/neck, both hands and wrist has just got worse and worse... until the point that I was sacked from my job as I couldn't hold a pen! I had only been there 3months..
My hands and fingers have been swelling, my feet/toes are so swollen I cant wear normal shoes and am living and dying in cloggs 3 sizes bigger than I used to take. I have been suffering with severe fatigue now for months too.

Moved home a few months before this and have a new gp. Went to him and he told me to take more tramadol - as there is no cure for Fibro. I wont bore you with the battles that followed over months but eventually gp agreed to send me to a rheumatologist and someone to test nerve conductivity in hands. The whole time the gp has been telling me (well strongly hinting) that I'm a hypochondriac and there was no point in these tests. He refused to give me an urgent referral etc.
Had nerve conductivity test - severe carpal tunnel in both hands (given steroid injection which has not helped hands) but the specialist I saw talked to me and asked me if I had ever heard of psoriatic arthritis and asked if I had psoriasis. I said no to both but told him I did have shingles and had it on my feet at the moment. He asked to see and told me it was psoriasis! I had been told by 4 different gp's over the years that I had shingles!
He said there is also swelling on my hands/wrists that he says is not related to carpal tunnel and thinks I have psoriatic arthritis. (so do I after finding out about it and Internet research but - you never know I guess)

After the steroid injection in both wrists - a few weeks later the swelling on my ankle went down to the best it's been in 7 years and the muscles spasms around my rib cage have stopped (yet funny enough it hasn't helped with the carpal tunnel!) Unfortunately I also had an allergic reaction to the cortisone, came up in huge blisters all over my torso and feel sick still on and off.

I wrote into to the rheumatology dept myself (as my gp refused) and told them what the specialist said etc. My appointment is in a month now after waiting 6mnths but in the mean time, they have sent me for a chest, hands, feet x-ray and today got a letter asking me to attend and have an ultrasound on my hands next week pre- rheumatology appointment. I am concerned that they haven't checked my neck/spine as it is permanently swollen etc.
At wits end and dont know what to do if rheumatologist says there is nothing wrong with me/just fibro after all this! I feel broken and finally the fight has all but gone out of me...

I have questions. Did anyone else's immune system go berserk like this pre-diagnosis and did/does anyone else have similar experiences to mine? When I see the rheumatologist I'm almost afraid to go through all the symptoms I have in case they decide I'm nuts and dismiss me or says its fibro - no treatment offered or antidepressants which I will not take.

I'm 47, never claimed a days sickness benefit in my whole life before now, claimed recently, yet found that I cannot get sickness benefit as I'm told I didn't pay enough NI (due to being off sick for a few months in that year and not claiming sickness benefit) in the year they decided to check and base my claim on this. I had closed my business and gone back to work 2/3 yrs ago. Have been off work now/unemployed 4 months.

I remember that my grandmother had arthritis but I was too young to know what type etc and she passed away a long time ago now.

Thanks for reading :)

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Oh gosh, Tiamegs, that is one awful story ... but sadly not an uncommonly long journey for some people to get a diagnosis.

I certainly didn't have an immune system that went quite as haywire as yours but there were certainly lesser signs before the joint pain struck.

The good news is you are finally getting a proper rheumatology review and it's great they are getting you in for the x-rays and ultrasounds ahead of your appointment. That tells me they are most definitely expecting to be going straight to treatment. Don't worry about your spine, they will likely examine and measure your movement before sending you for x-ray/CT/MRI.

My best advice would be to get yourself as informed as possible about PsA between now and your appointment and start making a list of all your symptoms and past medical history, drug reactions and symptoms. Don't miss out anything because you don't think it's relevant ... for example, if you've had any eye problems include them, same with stomach issues, any and all nail and skin issues. If you think the 'rash' on your feet might improve then take a photo now ... same with anything else which can be transient. You'll see on our discussion forum that we have recently been counselling another member, Irishchick, exactly the same for her appointment today so you may want to check that discussion.

There is also an excellent patient orientated book mentioned in book reviews, it's available as a Kindle e-book as well as a paperback. One of the authors of the book is also an author of this helpful article http://www.uptodate.com/contents/psoriatic-arthritis-beyond-the-basics?source=related_link.

Feel free to join/take a look through our UK group Cuppa House. We have all the NICE treatment guidelines there and some other UK specific information. Here in the UK we are also lucky to have some PsA specialists at centres of excellence in Bath and Leeds so you have many reasons to feel positive. You're a long way from the end of the road. And you've found all of us here for support.

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Oh my. This is quite an epic story. I wish I could say it was unusual.

I agree with Jules that the preparatory checks bode well for prompt and thorough treatment. You should be able to sift out the symptoms you have down to the bare facts. I usually prioritise in case my rheumy stops listening ... I like to have the worst, most persistent or most pertinent symptoms at the top of my mental list.

I hope your forthcoming appointment helps make sense of all this. Nobody wants a diagnosis of PsA or any other form of inflammatory arthritis, but at least it provides answers and a way forward. The mass of health problems you've had ... all attributed to different things, plus sceptical, and/or (I'm thinking of your GP) just plain unhelpful doctors is bound to mess with your head. It's distressing.

I wouldn't say my immune system went beserk in the years before diagnosis, just generally felt like death warmed up and hobbled around on a huge & very painful knee for a year or so.

That fear of being thought nuts - it's familiar to many of us. Although I've learned how to be a good advocate for myself usually I still get the collywobbles before an appointment with a new doctor. I hope we can help bolster you up.

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Oh - you poor thing. What a run around you have had. You have definitely come to the right place for great support. Unfortunately we all seem to go through similar stories with multiple variations before receiving a diagnosis and getting appropriate treatment.
Keep yourself well informed, be proactive and don't give in.
Let us know how you get on. We'll be sending positive vibes.
Fingers crossed for a diagnosis that you are comfortable with, a treatment that suits you and gentle hugs until then.
Bec xxx

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Thank you all for the replies/advice. I think my biggest worry is to go through all this and get told 'nothing is showing on tests'. If that happened, not sure what to do. Will of course post back after appointment. Thanks :)

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If when you say tests you are thinking of blood tests and x-rays, then I would say that a large proportion of us here have had 'nothing showing on tests'. I had high ESR / CRP to start with (the blood tests for inflammation) but that does not always show up, even with severe disease. There are no conclusive blood tests for PsA. Swelling is considered very significant however, so make sure you get photos of any swollen joints as well as the skin problems. Due to the law of sod, swellings could miraculously disappear the night before the appointment.

I'd imagine that the imaging you are having is to establish a baseline i.e. to see how your joints are at the beginning of treatment. And a chest x-ray comes as standard to exclude TB. I hope that's what they are for anyway.

However, worst case scenario: if you do find that you have one of these rheumys who seem to expect PsA to come emblazoned with a neon label and who does utter the dreaded 'nothing showing', that is not the end of the line. If you are pretty sure you have PsA you do what so many of us have done & get a referral to a better rheumatologist. Check out 'How to be a pushy patient ....' in the 'Newbies Guide to PsA' here. You'll see that we Brits have the right to see a consultant of our choice. And there are at least two centres of excellence for PsA in the UK.

I don't think you are heading for worst case scenarios though. I reckon you're going to be okay. But although you do need to prepare well for that appointment it's not a last ditch scenario. Keep us posted with any questions or thoughts in the lead up if you want .... we all know it's nerve wracking. Good luck!


Tiamegs said:

Thank you all for the replies/advice. I think my biggest worry is to go through all this and get told 'nothing is showing on tests'. If that happened, not sure what to do. Will of course post back after appointment. Thanks :)