Help!

Help!

I am a 48 yr old still menstruating (despite mirena iud) Specialist nurse (different field) and have had several episodes of undiagnosed joint pain for years that resolved spontaneously. Family hx - mum Psoriatic Arthritis and COPD (died age 66) dad alive and well, bypass and MVR and knee replacement recently now 73. Me, glandular fever sixteen, endometriosis dx aged 28. About ten years ago I woke up one morning with swollen painful hands and knees, sore throat, and fatigue like I had never known. I had just moved to England from Scotland, changed jobs, so was under a fair amount stress. I then developed oral lichen planus, and a lump in left breast. I saw GP had widespread lymphadenopathy (breast clinic - lymph node too) low WCC mildly elevated ESR. I saw an immunologist who found cadiolipin Ab and CD4 count of less than 200. After months and some fluoxetine I got better and it was put down to stress. I have had several episodes related to stress since, when my mother was dying and I was physically and emotionally exhausted, so I didn't bother with doctors. Not sure if relevant - but I was bitten (accident, by a puppy, tiny wound) and ended up in hospital for a week with sepsis and ? Allergic reaction to bite, and another time I also had a reaction to meds I was on for unrelated thing, developed a swollen calf and collapsed unconscious at gp, low O2 and bp... Suspected PE but ctpa neg for clot, but showed ground glass appearance ? Pulmonary oedema. Cardiology - echo perfect.

In December I had a period of extreme stress, my son has bipolar and was v. unwell, suicidal. My partner (of four years, we dont live together) was made redundant and had to go back to Scandinavia so my support vanished too. I went off sick with stress but quickly got ill - developed pericarditis. I was floored. My gp didn't do correct bloods - no crp no ESR - but told ECG changes (not told what) and low WCC. Not conclusively pericarditis but likely. Developed some knee and hand pain and I went back and asked for repeat sle screen - negative. I went back to work full time in march and have coped but I am more forgetful and very easily tired.

For first time I have felt my health is affecting my work - people are treating me differently, I am usually at forefront and get involved with change and service development etc, but I feel I am being put out to pasture a little (maybe in a supportive way but its worrying) I moved house end of may and bang. Recurrence of chest pain, severe pain at base both thumbs and palms and wrists, can't hold a glass or steering wheel, swollen feet, morning stiffness in feet and brain fog. Pitting oedema both feet. I carried on going to work, but I am making mistakes, forgetting to finish jobs, 11 hour day, I'm exhausted by 7 hrs. I actually went into a room on my break and fell asleep. I saw a different GP last week who for first time suggested RhA gave me naproxen and did ESR (normal) fbc (normal) Rh F (normal) just waiting for anti CCP.

I went to Paris with my partner couple days ago - I nearly cancelled - but in event i couldnt cope with my luggage and walking in Paris, it really spoiled it. I'm back since thurs and my feet are so swollen I can't get any shoes on (I'm supposed to work 11 hours tomorrow - I can't be off I'm on a written warning because I was off when my mum died, the dog bite and the pericarditis) my hands hurt and I am shattered.

Because I'm a nurse I think people are thinking I'm a hypochondriac, and because I was off with stress in December before the pericarditis that I'm mad/depressed. In December with all the stress I was drinking a little too much and told my gp, but I haven't had a single drink since February (except a couple in paris), but I don't think I will get referred to rheumatologist if my bloods are neg cos iv admitted emotional distress..... I'm going to end up losing a job I love and then my home if I don't get well...?

Sorry its so long - its great to get it all down on paper. Suggestions anyone?

Someone on here suggested taking photos when swelling there - so my usually size 4 feet below - hope you have eaten! :)

50 Replies

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  • You can have Sero negative RA or it may be some other type of inflammatory arthritis. I have suffered back and joint pain since my mid twenties. Had spinal surgery but the rest of my joint pains were ignored over the years. I was diagnosed with Sero neg RA 2 years ago which was revised to PsA a few months later ( I have no psoriasis but one of my sons has it) but after being diagnosed with Lymphocytic colitis last year, was finally diagnosed with Spondyloarthropathy. I rarely have a raised ESR and CRP is usually only raised when I am really poorly. I too was a nurse and had to give nursing up after my back surgery and felt that they thought I was a hypochondriac! Sorry that I've gone into my medical history but wanted to show you that you can have inflammatory arthritis without a positive RF. Also have you been tested for Antiphospholipid Syndrome? Just really to rule it out because of your pulmonary/cardiac issues. It may be worth asking to be tested for that.

    Keep taking your photos because they are good evidence and push for your referral to a rheumatologist. And do lots of research, so you know what is what when you finally see one. Good luck. Clemmie

  • Thank you so much, i am so tired, frightened, worried about work, and im afraid to talk about it because i am 'the strong one' who looks after everyone else, so people look a bit nonplussed if i actually need anything... I am usually a workaholic and i can sense the disapproval of my consultants at work because i am not staying late or taking on more work. Such a shame flares are triggered by stress, it allows even heath professionals to think its all in your head... My cardiolipin ab was neg in frbruary around the pericarditos time, but i am a bit worried cos my cholesterol is 6.4 (mainly good cholesterol) i have read high cholesterol is feature of rh a, and increased cardiac risk too. I am expecting ps a to be mentioned because of my mum apart from scalp sores i have no skin involvement.

  • If you are diagnosed with PsA, the treatment is pretty much the same as the other types of inflammatory arthritis apart from Hydroxychloroquine, which isn't prescribed as it can make psoriasis worse. I inject Humira which works pretty well for me. I have had high cholesterol for years but recently been doing a lot of reading and I'm not sure that it's as bad as we are being led to believe. Clemmie

  • I know, I wasn't in least bit worried about my cholesterol before, I eat butter and cream and lots of fish and nuts, intentionally as I think it preserves your looks :) and I don't smoke and was reasonably active, so no other risk factors. More concerned now though, due to fact Rh Arthritis doubles your cardiac risk and the fact rh arthritis is associated with high cholesterol is interesting

    It's interesting how many nurses are responding too! The job is stressful, throw in a dying mother, absent partner, a son with bipolar and it was kinda understandable I had too much stress. I'm really sorry you had to give up nursing. Did you feel better after? Do you think the job made you more unwell?

  • No I didn't feel better, I was worse. After the surgery I was unable to walk. It took me a long time to learn to walk again and was still using a stick 6 years later. Thankfully I am doing well now though. I don't suppose that the job made me unwell but it certainly didn't help once I had the problem. I ended up giving up nursing which I think made me quite depressed. Luckily I was able to get through it and I am fine emotionally now. I think you can deal with things once you know what the problem is.

    Incidentally, re the high cholesterol, I've never smoked or eaten butter or drank milk ( I don't like them) but family history is bad re heart issues. I was diagnosed with underactive thyroid last year ( yet another auto immune disorder) and so I'm hoping that my cholesterol will reduce once optimally medicated. Apparently it's well known that hypo causes high cholesterol. Clemmie

  • This is interesting Clemmie. I don't have high cholesterol but my late mum did and I've been hypothyroid for many years. I am told I'm not otpimally medicated but my GPs say it's a fine line I'm on between over and under active now.

    I do have arrythmia. Both my parents died suddenly of heart failure at 73 so I do worry about the link between systemic inflammation and CV diseases.

    I can't digest rich food either and hope that bad associations after years of gallstones will keep me off it even when gallbladder comes out on Tuesday! I do love seeds and nuts. X

  • Oh my goodness you have been through the mill. First point I would like to say is that you can have sero negative RA factor and have RA, there are a lot of forum members that are negative and I'm sure that they will be along shortly to share their experiences. I was sero positive RA factor but my anomaly is that my inflammatory markers are all normal despite swollen joints. Rheumatology do a thorough assessment of all the joints, fatigue, stiffness, and lifestyle issues. Blood results are factored into the assessment but are not the 'Holly Grail' for being diagnosed. Judging from your symptom description you need a Rheumatology referral, especially as you have had some cardiac issues. Rheumatoid Disease affects connective tissue, joints being the most common tissue but heart and lung tissue can also be affected. It is a system wide disease not just joints!

    As a mental health nurse, it saddens me in this day and age about the ignorance about mental health and as you rightly said the labelling that you are assigned because you have had stress and depression in the past. This means that you have a bit of a fight on your hands to overcome these predjuices and to make health professionals take your physical symptoms seriously and not pass off as in your 'head'. You need to make a list of your physical symptoms, show GP that you are knowledgeable by stating that RA can also cause cardiac problems ( in case GP is not up-to-date in all that is RA) and assertively ask for a referral to Rheumatology. Broken record technique, keep repeating that you want a referral, this usually works as they become too tired to argue and the allotted session time will be running out.

    If you are diagnosed with RA, this is classed as a disability (long term health condition affecting your activities of daily living) under the Equality Act 2010. I would recommend reading this as this gives you knowledge about work discrimination and the fact that work has to make reasonable adjustments. Do not assume that if you work for NHS that they are disability aware, I have seen some of the worst cases of ignorance, intolerance and blatant discrimination in some health professionals, managers, etc., who should know better. I assume that you have been referred to Occupational Health (OH) for your previous health absences, they can be immensely helpful, especially more so when you have a disability as they will help to recommend suitable adjustments, such as working shorter shifts, etc. Another reason why you need to get a Rheumatology referral. Do let us know how you get on. The forum is a life saver for understanding what life is like living with RA, people who really really do understand, and it is informative, educational and full of good tips.

  • We all know how you feel ,I have had RA for 2 years now and am on MTX and salfazalazine,but I am going onto injections next week to see if that helps because at the moment the tablets aren't working and the fatigue is unbelievable,I was out with my wife shopping the other day,when one her pals said sometimes we have to push our selfs that wee bit more, I had too bite my lip,if only people knew what this does to our bodies

  • When people comment like that I have to smile or else I'd say something I regret...😡

  • Hi thank you! My replies were all muddled for some reason :)

    I haven't got a diagnosis yet, but working with doctors and nurses you would hope I would get support, and I do from my closest colleagues and line manager, the consultants and other staff think i have lost the plot !

  • Braecoon - i cant reply directly to you not sure why! Thanks for this, really practical good advice. I'm pussyfooting around it a little trying not to alienate my gp or my boss, but I will have to arm myself with facts and fight for my rights! I haven't actually ever had depression, they prescribed fluoxetine ten years ago as when I was sick I had raised EBV titres and they felt it would help the chronic fatigue (it did I think, or I was getting over a long flare naturally) My sons bipolar is a major contributer to my stress and health, which makes him feel even worse, bit of a vicious circle!

    I will make an appt for occ health to see if they can fast track my rheumatology referral after I see GP again on 8th (first available appt!)

    I have almost been praying for a positive anti ccp which I feel very guilty about, but without a diagnosis I'm going to get no help.

    Have you had to have adjustments at work?

  • Re the possibility of PsA, inflammation markers are not always raised with this type of inflammatory arthritis. And skin disease - you mention scalp sores - need only be minimal to help with diagnosis. I had no skin disease when I was diagnosed, just one dodgy toenail. Family history is very relevant and stress is a recognised trigger factor as I believe it is with RA too.

    I know that being a nurse you probably know a lot more about how the system works than I do. But I do believe that while some doctors might think that emotional distress makes a patient a bit unreliable, others will see it as an almost inevitable add-on given the issues you've had. I really think you should ask for a referral to rheumatology ASAP. It might just be plain sailing from the start, but if you do get knocked back keep on pushing. These diseases are difficult to diagnose and some rheumys get it wrong .... many of us have been on .... ahem .... a bit of a journey, but persistence pays off eventually.

  • Did you develop psoriasis afterwards? My mums skin was very bad, it made her miserable. I thought my scalp sores were related to my hairloss, my scalp was very tingly and itchy when I had pericarditis and my hair has gone a bit raggy and tufty looking, which was why lupus was mentioned again.

    Do you get brain fog too? I'm usually sharp as a tack, but my head feels disorganised and slow, I was getting my son to help me by putting up curtains yesterday as i couldn't do it, and told him to look for a rolling pin instead of a screwdriver, I misjudge kerbs when driving, forget things all the time. I'm seriously worried about my reputation at work.

  • I have psoriasis now, 3 years after diagnosis. And I had it for about 10 years of so 33 years before diagnosis. It's not necessarily a biggie in terms of diagnosis of PsA as there isn't much of a connection between severity of skin disease and onset of PsA.

    Oh yes, definitely had brain fog, though I would not have called it that back in the day. I just felt inadequate ... blamed myself for every daily struggle. You sound as if you're in a similar place. Once I started meds I got some relief very quickly and realised that crawling through every day wasn't 'normal' and nor had it been down to personal inadequacy.

  • God I hope I get a diagnosis then, I am embarrassed every day - getting words wrong, forgetting things, time management gonecto pot, I still work too hard but love my job and don't want to lose my credibility! Thanks for that bit of hope, this is almost worse than the pain.

  • Take really good care of yourself meanwhile. I feel silly saying that to a nurse but cobbler's children & all that! If you need to sleep & can sleep, then do. If you can find time to exercise it may help if indeed you do have inflammatory arthritis. Eat really well etc. etc. Do not on any account beat yourself up! Good luck to you, go for it and let's hope you get some much needed answers.

  • I think it's so sad when people like you are met with this wall of scepticism by colleagues and your doctors - who, as health professionals, really should know much better.

    I too have a long history that I feel relates to everything that's happened to me over the past ten years, including an early menopause and sudden deaths of both parents, both at the age of 73 from heart failure with symptoms of vascular dementia.

    I do have a four year diagnosis of sero negative RA and I also have Hashimoto's Hypothyrodism and high ESR when not on steroids or dmards. I'm on oral steroids just now having failed to tolerate my fourth dmard to date recently.

    However I no longer have the classic symptoms of RA ie synovitis. But I do have horrible parasthesia pain and pins and needles which for me are the worst along with periods of eye dryness, scalp sores and itching, nose bleeds and intense fatigue and dizziness. The only reason I think I am believed is because of my fluctuating ESR and because I don't give the doctors an inch with their talk of anxiety or telling me that it's a case of wait and see where it goes - what happens etc. I've replied to this let the dust settle by saying "on my grave? No thanks!".

    I completely understand that you are hoping for a positive anti CCP. I did too but it was negative - 40% of RA sufferers are.

    My GPs think I have seronegative Lupus because of my long history of skin problems and hairloss and now the parasthesia and numb face plus boss bleeds. But my rheumy isn't keen to re diagnose me and is biding his time having decided that my problems have been non erosive to date so he's not in a rush and I'm currently just on steroids. I don't want to wait to have a heart attack as my dad had at my age or sustain kidney or lung damage as he drags his heels. I have arrhythmia but not a high cholesterol.

    I tell you all this about myself in order to explain that many of us on these connective tissue disease and neuro communities are with you in spirit - your experiences of many things are similar to mine and I would say that it's a question of toughening your armour and fighting your corner tooth and nail if you are sero negative.

    I think the psoriasis in your scalp and family history is probably your key to being taken seriously and hopefully to some kind of diagnosis. I would also demand to get the mental health reference deleted from your medical records if possible?

  • I know - its amazing how they dismiss my own reports of brain fog and joint/chest pain and hairloss etc, but as soon as I admit to being very worried my son might kill himself and for a few weeks having a couple of drinks at night to help me sleep, they believe that! I am Scottish, alcohol features heavily in our lifestyles, but both my parents had alcohol problems and I hate alcohol. I do/did drink socially, but never to get even tipsy, and the one time in my life I used it as a crutch I stupidly told myou p... Probably because i wanted her to understand how anxious i was about my son. I stopped well before I went back to work and in about 4 months I have had probably ten units in total.

    I can't deny I have been under a lot of stress, when my mum was dying I was up and down the M6 being her only carer though I was in Manchester and her in Ayrshire, when she died I had to deal with it all alone, and my son was very sick then. I don't think I am dealing with that amount of stress differently from the next person, and I doubt they will remove it? I might ask my GP not to mention it too heavily in the referral letter though?

    It sounds like you have had a horrendous time too - autoimmune illnesses are still so poorly understood. I think people have started to see me as weak, or someone who can't cope... It's so frustrating. I have left this festering for years for fear of being labeled - if that first immunology consultant hadn't told me my condition at time was stress related I would have persisted, but now I am so sick I have too much to lose to worry what they think.... I was sure my ESR would be up this time I was in so much pain and exhausted, but it wasn't ...but im still going back. Maybe tomorrow if I can't get my work shoes on!

    Will they want to know about all autoimmune illnesses? My maternal grandmother had thyrotoxicosis and developed AF secondary then died of a CVA at 63, my mum died at 66 but was very frail for about 4 years prior ... She had been a formidable woman, a matron, local councillor, I don't want to be disabled this young!

  • At the GP visit before my first flare, the NP completely blew off my complaints of pain all over and complete brain fog bc my RA tests were all negative. The med tech actually had the nerve to comment that I'm "too sensitive".

    Three wks later: massive flare w very high ESR & CRP. Neg anti-CCP and RF doubled (but still within normal range, so considered negative). Then that NP and med tech literally slunk by me, shame-faced - and the GP actually become very concerned and apologetic!

    I agree w those above that recommend "not giving and inch" when they dismiss a diagnosis based on lab results. Have your sero-negative and negative anti-CCP RA stats all ready for your next visit! 👊🏻💪🏻💨

  • With regards to stress I think the medical world grab onto this rather too quickly when looking for answers to our symptoms. If you have an underlying health problem dragging you down you will get more poorly when hit with stress. If you get diagnosed and treated correctly you will probably look back and realise you were actually very good at dealing with stress. When we ladies get to a certain age it seems to go against us even more. xx

  • Just hit the wrong button. See below for my response to stress.

  • I am RA negative. Often inflammation markers negative. And my cholesterol is absolutely fine. It's the pain, stiffness, swelling, fatigue, etc that got me diagnosed. And as for medical professionals understanding. Nope, frequently not . . , unless you are their patient maybe. So it's definitely them - not you. I'm still sussing out the best way to get what I need, but persistence is definitely required. Keep at it! & I'm sure you'll get somewhere. Hang in there, & be kind to yourself. 😀

  • Thank you, when my last lupus screen was all neg after the pericarditis and hair loss i didn't go back to gp as she was starting to adopt a 'what now?' expression on her face.... But i regret letting it continue for almost five months until iv got this bad. What part of country are you in? Iv researched the rheums at my local hospital and one specialised in sero neg/psoriatic etc, so am asking for referral to her. Would prefer a recommendation though. IM pretty sure i shouldn't be working just now, but without a diagnosis its hard to be off with 'swollen joints'.

  • Hiya, I'm in North Kent. Anywhere near you?

  • Nope I'm in Manchester :)

  • Hi Mirren, I have spondyloarthropathy and took a long time to get to diagnosis because did not show in bloods except HLA B27 positive. Postive ANA too. I had pleurisy, back pain and stiffness, colitis, iritis, scalp sores, rashes, mouth ulcers, bladder isuues, fatigue hits like a train and worse as got older, stress etc does not help of course. I Remember my feet looking like your photo way back, also swollen fingers, joints etc. Three knee ops too. Have a family history of autoimmune disease and an uncle with psoriasis. Also have Aps and take aspirin. If you have a rheumy with sero/neg I would give that a go to start, you never know. Photos are a good idea as things pop up and down. Good luck. x

  • I think there is a consultant at MRI who specialises in sero neg - I'm going to go to GP tomorrow and ask for a referral to her - I was quite well today at work and don't feel too bad tonight either but my feet are huge. I have noticed very small white lumps under skin at base of my thumb on rt hand - could they be early nodules do you think?

  • Hi , Mirren, Sorry do not know that much about nodules. I had a really bad left wrist joint last year and had to splint it up for a while and then it had a lump on it. Showed my Gp and he said "oh its a nodule" but it has gone down now. Thats why I think photos can be good as sometimes these things pop up and down. x

  • Hi Louise, can I ask how your APS was DX? I was cardiolipin ab pos years ago but it was never followed up. I had a collapse suspected PE 2012 and it was referred to then - but not repeated... Then my Gp did it in Feb and it was normal...

  • Hi mirren,

    I was diagnosed in London but of course there are other consultants around the country too. Have a look at the Hughes site which gives you a lot of detail about the condition and there is also a site on healthunlocked. Prof Hughes is at London Bridge Hospital hence Hughes syndrome and he works with collegues who are also very well versed with the condition. You can give the secretary a call and have a chat they will be able to give you more details. The consultants are rheumatologists so may be twice as helpful for you. APS is of course called Hughes syndrome too hence the link. Underactive tyroid, Sjogrens and APS can often present together too. I have psoriasis in my family history. I am still learning about APS but I am sure I read somewhere that it can cause low WCC on occasions. Also if you have had a positive cardiolipin it can alter and even show normal. Hope that helps. xx

  • Hi Mirren,

    Further to the earlier replies, Inflammatory arthritis (IA) is difficult to diagnose, and a firm diagnosis can and should usually only be made by a GP with a special interest in musculoskeletal disease (a GPwSI) or by a Consultant Rheumatologist. There is no single test that you can take to tell you that you have Rheumatoid Arthritis, Ankylosing Spondylitis or Psoriatic Arthritis, and it is important that if your GP suspects that IA might be a possibility, the best and most vital thing to do is to refer you as rapidly as possible to a consultant rheumatologist to get a diagnosis.

    Treatment for RA should it turn out to be that has improved tremendously and there are now very good drugs to treat the condition. I have put a link to our website for you to look at to find out more. If it does turn out to be RA then please feel free to call the helpline to talk in more depth about it:

    nras.org.uk/

    Helpline - 0800 298 7650 Monday - Friday 9.30am - 4.30pm

    It sounds like you have a supportive line-manager at work, which is great, however if you have any concerns about your work and if you want to read more about your rights if you are diagnosed with RA, do have a look at the work section of our website or request copies of our 'I want to work' and 'when an employee has RA' booklets.

    Hope this helps and that you are able to get a speedy referral to a rheumatologist after your next GP appointment.

    Kind regards

    Emma-NRAS

  • Can I just ask how long you have had the mirena? I only ask , as i had one for 3 years and it was the most miserable 3 years of my life with the strangest and weird side effects and I think was the beginning of the triggers for my RA. I woke up one morning with a knee the size of a football for no reason whatsoever. It was the last straw in a long line of side effects and I insisted they take it out. I started doing research on it and have since found out that there is a class action law suit in the US because of the side effects of it. I know it is the IUD of choice for many and pushed heavily by GPs and Gynys, but I would not recommend it to anyone especially someone with an autoimmune disease, due to the side effects it can trigger.

  • About 3 years, and I have found if great tbh, and my symptoms precede it though not so severe... I think I'm at the age these things come to a head really.

  • Yes they do, we all get there at some stage. Just wondered as I have heard from so many about the lingering side effects after removal. It took a couple of years for them to finally subside with me. I hope you can get sorted and that it doesn't take too long.

  • I had two mirena coils over ten years and the second one was removed a few months before my RA was diagnosed. The timing would certainly fit for me so this is interesting SOM - although I was hypothyroid and had eczema and alopecia long before the coils. Tx

  • I am thinking its a red herring... I'm interested in the links between endometriosis and Rh.A and actually EBV (glandular fever and endometriosis and Rh. A... Lots of folk with endo have mirena and its life changing. I'm not saying it definitely isnt related to mirena, but my first symptoms and def first flare were well before mirena. I did have a copper IUD before though.

  • I think these autoimmune journeys are probably as much about the red herrings as they are about real progress - or maybe two steps forward and one back - certainly for me anyhow! X

  • Yep I guess so :) but if endometriosis is linked its natural people would suspect mirena as its commonly used for endo? I think it's all the autoimmune illnesses that are linked and there is more and more evidence EBV is much worse than a 'kissing disease'

  • I agree. Apparently I also had that at some stage in my life, must have been mild as I never even noticed hahaha. It is like a perfect storm of things that occur I think sometimes.

  • I had no health problems apart from massive bleeding prior to the mirena. It was terrible from day 1 with incredible cramping to begin with that continued throughout and I was told it was normal and would go away eventually. It went downhill from there. I started getting something akin to vertigo sitting at my desk at work, I started getting reflux, joint pain, extreme exhaustion etc etc . Once ot was taken out the symptoms slowly subsided until about a year later when all of a sudden I woke up one morning and my left knee was hugely swollen. It has gone on from there. Given my extreme sensitivities that became so much worse after having the mirena it was probably something I should never have had implanted. I think it added to the triggering of the autoimmune problems I have now. Some people just shouldn't have them but as it is pushed by the company as the cure all for everything it will continue to be pushed on women with no prior investigation done as to immune issues or other problems. There is a world of info out there on the mirena and the side effects it causes. Here is just one relating to mirena and RA, there are heaps more.

    availclinical.com/news/auto...

  • I do wonder for me as well given that I share your sensitivies and dodgy immune system. The first mirena was okay bar some cramping and spotting for the first six months. But the second wouldn't go in and I was already really struggling with colossal periods having had the first removed. So I was referred to a gynaecologist who looked at it pre insertion and pronounced it to be a different design to any he had seen and then shoved it into me there and then - I was wholly unprepared as not having a period at the time. I passed out with the pain and they had to keep me for a few hours with a cuppa - think it was partly shock!

    After that I reacted badly for ages - should have just had it removed but I so wanted it to work as the first one did. It must have evevtusjjy settled down but you have made me wonder what it may also have provoked now as my menopause came early and the RA was the main symptom I suffered of this really.

  • I ended up having a hysterectomy two years after I had it removed. I grew enormous fibroids with it in, apparently that is not supposed to happen hahahah Gee it's me, nothing would surprise me. I fully suspect that it triggered a lot of the early stuff that I never connected until I started doing some research. I am just horrified that they shove it in to women as some sort of miracle, but really have no idea of ling term side effects, nor do they ever ask, in my research, if you already have sensitivities to things.

  • My boss allowed me to take an emergency appt this afternoon so got to GP in my uniform, was seen 30 minutes late, and told off for not going to see the GP I saw last ( you don't get a choice...) Explained i couldnt do my job safely or drive safely and wanted referred to rheum, told I had to wait for my anti-ccp - I said i wanted referred now, she asked my history then told me I was going to fast ....! She was very hostile because she was behind - and from somewhere I found the strength to stand up to her and told her speaking to patients like that was likely to upset them... I insisted I was referred to the seronegative specialist at MRI because its hard to diagnose and needed a specialist and that was all I wanted ... She did a squeeze test, but my squeeze test isnt painful now with naproxen, but she gave in in end.... God knows what the referral letter will be like!

  • The fact that naproxen helps you may well be significant because spondyloarthritis is often treated with NSAIDs to good effect - even more than RA. Also it might be worth asking for a short dose of oral steroids to see if this makes a big difference - as it should if your problems are inflammatory? If you have AI the steroids should really help.

    Well done for standing up to GP - it's so important not just for yourself but for all patients who struggle with their role in consultations!

    Tx

  • I don't think it will be spondyloarthritis though - isnt it necessary to have sacral pain? I do get a stiff back but its the least of my problems... My Gp who first suggested Rh a based it on bilateral hand and feet symptoms mild bilateral elbow and knee ( Swollen knees, stiffness but less pain) pericarditis and hx of low wcc and family hx psoriatic.... He said PsA usually unilateral but seronegativity made that his second prediction. He was good. Did all recommended bloods except crp, gave me naproxen. Naproxen helps a lot, but not total pain relief. If I squeeze the worst joints middle finger left hand and both thumb joints they do hurt more rest just feel hot and tight and stiff.

  • Well your gut instincts are probably as good as any and unlike me you are from a medical background. I've had to learn the hard way what all these joints are and how the nervous system works (still a beginner on this!). Not sure that sacral problems always present as painful - pass on that!

  • It's almost enjoyable if it wasn't terrifying - like a living jigsaw - what monster am I harbouring?? Trying to piece all the bits together to find the weapon that destroys it before its too late.... A sort of internal crystal maze :) x

  • You express it perfectly Mirren - bonkers?!

  • Hi Mirren I can't believe what you are going through. I thought working in the NHS you would get all the support and understanding you so rightly deserve. You should have a medal for what you are having to cope with.

    It took nearly a year for my RD to be diagnosed when I was 30 in 2000, lots of useless doctors just fobbing me off, telling me I was too young to have rheumatoid. By the time it was diagnosed both my hips were destroyed, other joints damaged. I really hope you can get a firm diagnosis soon and find a way of moving forward. You have my full admiration for showing so much strength.

  • goodness I can't believe you are sparing some sympathy for me when you have been through so much! I have been very lucky to have a job I love for all these years, I may never need new joints or be so I'll as you have been, but its so frightening to feel like you are losing peoples confidence, apart from the worrying financial part of eventually not being able to work if it turns out to be RhA, I don't want people to treat me like I am past my sell by date..... I have even thought about ending my four year relationship! My partner is in Denmark since January and we have only seen each other for a few days a month since.... I feel like I am letting him down too.

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