I was sent to Rheumatology last year as my hand keeps swelling and I can’t bend my fingers. This was after many years of other issues but I never put the puzzle together and thought I could have been suffering with an autoimmune disease. I have suffered with Angioedema since 2017, with my face blowing up. I have that many allergies now, most new drugs trigger a reaction. Before that it was my hands all the skin peeling off them if they came into contact with any chemicals, water or heat. I have night sweats, temperatures and a butterfly rash on my face which is also driven by heat. I have exhaustion fatigue and very bad brain fog. I have autoimmune reynaulds as this has also affected my vascular system now. I get pneumonia nearly every year and pick up every bug. This has ruined my life in so many ways.
All of my bloods came back clear last year and they diagnosed complex regional pain disorder and I told them this was not that. They made me feel like I was going crazy as every time I bent my fingers or gripped things they would swell up. Finally in November they scanned me while the swelling was active and confirmed I had inflammatory arthritis as I had fluid around my tendons. They put me in the indifferentiated tissue category. I’m very lucky and my partner has taken over the cooking side of things (huge trigger) since April last year. So I don’t swell that often.
They then looked at my bloods in a different way and said I had a positive ANA test. They started hydroxychloroquine and methotrexate. Initially hydroxy helped with the hair loss, psoriasis on my scalp but it wasn’t touching my joints yet. I felt awful over Xmas and my rheumatologist put me on steroids. I then got pneumonia again and was on 2 more weeks of steroids. When I come off steroids all my symptoms flare and my hand swelled up again. The GP then put me on more steroids.
I was called in for a meeting with 6 rheumatologists today and I have left absolutely devastated. They took me in there to humiliate me. I’ve got countless pictures of my face swollen, hands swollen, allergic reactions, butterfly rashes and I have every symptom of lupus. They have all said basically it’s all in my head I shouldn’t be on these drugs and made me feel like I’m going crazy. They all blamed fibromyalgia and said I need psychological help. I was so humiliated. I never want to go back. They’ve made me feel like I’m going crazy as I’ve currently been having a flare for 2 weeks of temperatures night sweat and butterfly rashes whenever I am active.
one of them was really rude and said ‘it’s not lupus so get it out your head right now’
I ended up getting very destressed they had an answer for anything I said like why would fibromyalgia swell my eyes shut? Why would my knees wake me up locking at night? Why would it make my hair fall out? They blamed steroids for everything. I said well I didn’t have steroids from April - October last year and everything flared badly in October again with red swollen itchy hands, an exhaustion so bad and all the temps etc. these symptoms are driven by activity and heat. I have to spend all of summer in a dark room with my air con as I can’t breathe I’m so breathless and all of me feels so heavy
they said the ANA was a weak positive and means nothing. Someone please help me I feel like im losing the plot. I don’t want to ever go back to that hospital. I have two other rheumatologists I’m waiting for but I’m scared to go and see them as these people have made me feel like it’s all in my head.
now I don’t have a clue what to think they kept saying there’s a room of 6 expert rheumatologists here telling you it’s fibromyalgia and you need psychological help. I don’t want to fight anymore. This has ruined my life for the last 7 years. I’ve been fibbed off by every GP and when I do finally see a light at the end of the tunnel, the hope of getting some quality of life back it’s taken away. I feel so stupid and ashamed. And I can’t stop crying. Can someone help?
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Tonkie
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I’m sorry to read this and hope you’re feeling a bit better after writing things down. Can your gp help in any way ?I see you’ve seen one but can you talk to another ? know I’m pANCA and why I was tested and so do understand it’s linked to Lupus but I’m sorry nothing else and I think you need some serious help in going forward.Could you afford to see a private Rhuemy? It may be a waste of money of course but equally it might help to have someone explain more to you. I wish I could offer more insight but this sounds really complex and really you should get help or be directed to another discipline for assistance. I don’t have any experience of Fibro but some on here do and hopefully someone can come along with much more information and personal experience. It is difficult and you could ring the NRAS helpline. X
Please don't feel stupid or ashamed. It is important to say exactly how you feel to medical staff, and also not to give up. Having pneumonia every year is not normal and clearly something is very wrong . I have RA , and had fibromyalgia for years, thankfully no longer. Fibromyalgia is exceedinglv painful . It also leaves you low,tired weak, depressed. It can affect your bowel too.Just google symptoms. It took a few years before my RA was confirmed. When it first started, 50 years ago, I would be stressed going to see doctors as I was in so much pain .Doctors would ask me if it was the stress of my job, or if I was eating enough etc. and suggested a tranquiliser or vitamins.This would stress me more, as I knew they were wrong, and I needed neither. I refused the prescriptions. Eventually, I was referred to a rheumatologist. My RA was confirmed more by Xrays than blood tests, as in the beginning the blood tests were inconclusive. My fibromyalgia was aggravated by fatigue ,stress and tension, so do all you can to chill and relax . If you can go for a private consultation . Have a list of all your symptoms and go through them calmly.You might not have fibromyalgia. See if further tests can be done to identify what is causing your symptoms. Steroids have bad side effects . I would not take them long term. Sometimes the drug is worse than the illness. Good luck.
I couldn’t agree more re steroids long term. I had polymyalgia and GCA back in 2012, and steroids are the only treatment. It was quite aggressive, and active gir years. In 2018, age 52 I had a severe stroke due to my adrenals shitting down as a result of steroids. I have severe adrenal insufficiency, and need to carry an emergency intramuscular steroid injection at all times. Good or bad stress makes me very unwell, and can progress to an adrenal crisis. I wouldn’t wish it on anyone, as you always need to plan ahead, and even then a simple arguement can make me very unwell. If there’s an alternative use that. It has also given me osteoporosis, which I’ve thankfully reversed, and type 2 diabetes 🤗
thanks for the replies. I’m just so lost they keep trying to diagnose complex regional pain disease. The joints in my fingers are red, hot, itchy and they swell til I can’t bend them. My heel is agony to stand on with sharp pain. My knees lock multiple times a day, stairs are hard as they shake so badly on them. My hips and bottom of back are also very painful if stood for any length of time. I know I will have an element of fibro as I’m aching all over my body as well every day. But I also have arthritis! They scanned me and confirmed it and now they are taking it back?? I don’t understand. I always thought I had osteoarthritis as I have that in my toes and I thought that what was happening to the rest of me but they told me in November it’s inflammatory arthritis after the scan. Now they are changing their mind again. They have no idea what they’ll be doing to me saying that. All last year when they were saying it was the wrong thing I pushed myself so hard and ended up in a mess in October. Now I’ll end up doing the same thing again as they are telling me essentially it’s all in my head. Now I can’t take steroids either (I hate steroids they’ve been thrown at me for 7 years and really affect me emotionally). So if I do any of the triggers my fingers will swell up til I can’t bend them but I have no one to go to. I’ve only been on methotrexate a month and hydroxychloroquine about 6 weeks. They’ve said I can stay on them for 6 months but then they’ll be taken off me. I didn’t even want these heavy meds to begin with but now I could be taking something that I don’t need?? They have completely messed my head up. I thought they finally understood. I had a scan confirming it, I had a positive ANA result and they put me in the undifferentiated tissue category. Now they’re saying none of that is true it’s in your head go away? Why did they take me in that room to do that to me? It was horrible.
Your definitely going to need help to get over that trauma. I'd be writing it down and submitting a formal complaint. When you feel able. Can you attend a different hospital?
Even if it is fibromyalgia you need treatment not to be terrorised.
Please don't let this stop you seeking further help. Big hugs.
I’m so sorry to read your post my heart goes out to you. Until recently My rheumatology have always been supportive but 3 months ago that changed and they have discharged me and stopped my hydroxychloroquine. To cut a long story short, I feel that they wanted to get rid of me and save their department money. I always thought medical professionals were so supposed to do everything they could to help patients but I don’t think that is the case anymore:(. I’m so sorry that happened to you, what horrible bullies 6 to 1 patient in pain. Big hugs to you Xxx
Yes that is exactly what I was going to say Sylvi.I had a bad experience in hospital.I contacted PALS and my rheumatologist ended up being accused of neglect
HI there ,I agree with sylvi that you should contact PALS immediately .You can ring them.I saw mine at the hospital .I eventually got referred to a very good rheumatologist at Guys , London hospital .He is Professor David d Cruz.Marvellous man.I used to get train from NE Lincolnshire to see him every year until lockdown. Nobody should be treated badly like you have been .Talk to your gp too.He seems to understand your health more
Hi Tonkie. What a dreadful experience you've had, I'm sorry to hear you've been treated so badly. The rheumatologists you saw sound like a bunch of bullies and I agree with others on here that you should make a complaint. You could also try contacting the NRAS Helpline on 0800 298 7650, they may be able to advise you on what the best course of action to take is. Good luck. 🤗
I’m so sorry you have been treated this way, quite frankly it’s disgusting!! I’ve never heard of having to sit in front of a panel of six consultants but that must have been terrifying for you. Then to have them accuse you of losing the plot and blaming it all on fibromyalgia!! Many of us on here have this alongside autoimmune diseases so it’s not a case of it being one or the other!
As others have suggested, I would really get in touch with Pals and put in a complaint. If you are able, what about seeing a private rheumatologist? Although sometimes the NHS consultants will be working at private hospitals too, you don’t want to end up seeing the same doctor!
I really hope you are able to get the correct diagnosis and the right treatment that will help you xxx
Hi there, just wanted to try and help. I had angiodeama from age 17, face hands, eyes, throat etc. I was under dermatology and immunologist for many years trying to find what type of angio it was but to no avail. Eventually I was just told to take 2 fexofenadine daily which has helped. Roll forward aged 38, saw immunology as was getting hives, itching, swelling again, he did tests and I had hypothyroidism plus some new allergies which I had indicated the things I thought it was. (I saw this consultant privately, it was worth it). I also have suffered with itching rashes etc all my life.
I also used to get chest infections at least twice a year and a cold every month.
Age 42, rheumatoid arrived, then fibromyalgia and now lichen planus in various places including mouth.
I had to have a hysterectomy at 42 as well so saw endocrinologist due to overnight menopause and found out my vitamin D was very low so now on permanent high dose.…sun has always caused me to rash up. And reading up on that vit d council website I was amazed the effects on low vit d and not having enough, and the blood test amount they check you against isn’t good enough it should be optimal levels for the best benefit.
I like you think it is all linked in some way and changes its presentation through the years.
I don’t know who you have seen, but maybe start back with immunology and dermatology and see if they can help.
I understand it can also distress you not knowing what is happening, Fibro certainly makes the senses more alive, and swelling up is horrid and worrying.
I tried to read up a lot at the time on the angiodeama, and it seemed to be linked to mast cells and tissues etc, but I am not clever enough to understand it all.
There is so much going on at times you cant decipher what it is, I have tried to break it down and deal with one at a time as no one has time to deal with us when there is so much. I managed a couple of times to get a double appointment with the gp but not sure that would happen now.
So I would list the issues and start to pick up on each thing.
I’m so sorry to hear all this ! I can’t believe they managed to get 6 rheumys in a room together-there’s such a shortage of them ! That must have been awful. Have you got someone who can support you through all this ? PALS and Healthwatch are good. When you are that unwell you need support -it’s hard to navigate on your own. I had two joint replacements before I was diagnosed and put on drugs to stop my joints breaking down !! -also been told I have psoriatic arthritis (because my father has psoriasis on scalp), then sero-negative. I also saw a private physio for a year and told I didn’t have rheumatoid as it always starts in hands and symmetrical and made me feel really bad as to why I wasn’t progressing after joint replacements and made me feel it was my fault (she has retired now or would have told her how wrong she was). I agree private appointments if you can as you get longer but know they are expensive. Sending the bestest of healing wishes and strength to you. Also -look at The Wren project ( they’re not medical) but provide listening support and group support for autoimmune diseases. Xxxx
thanks for all of the help. Today I am a little more angry about it. My partner came with me but because they were running late he had to go and collect the children and I had to face all 6 of them on my own.
I was gaslit. 3 of them that scanned my hand in November were there. All 3 of them agreed I had fluid on my tendons and diagnosed tensonyvitis. They said this fluid is only present in inflammatory arthritis. All 3 of them agreed to start hydroxychloroquine. Yesterday those same 3 were present and only one (my rheumatologist) took responsibility for me going on that drug. Apparently everyone else in the room did not believe I had inflammatory arthritis. Including rhe other 2 which scanned my hand in November!
There was a clear ‘ringleader’ the man who was rude. He spoke for everyone pretty much. I was telling my rheumatologist since April last year my hands hurt and she didn’t listen to me. I then started to feel like it was in my head and I got more fibro symptoms like aching all over. What they did to me yesterday just feels like they don’t believe me again. They had an answer for everything.
They told me I don’t swell up enough for it to be inflammatory arthritis. When I swelled up last April, my hand was so bad I lost the feeling in my fingertips and that’s when I saw the GP (they had been swelling for years before this but being a carer I’ve always just got on with it). The GP gave me steroids and said that looks like rheumatoid arthritis and she sent me to rheumatology. The steroids took the swelling away but afterwards my hand had turned blue. By the time I got to rheumatology she was that worried about my hand she sent me straight to A and E as she thought I had an ischemic limb. I was put under every test under the sun to check for strokes, blood clots, cancers etc but she never listened to my original complaint - arthritis.
They diagnosed complex regional pain disorder for 7 months. I saw the pain specialist who said I do not have this and he agreed with arthritis and that rheumatology should be seeing me.
They finally diagnosed autoimmune reynaulds as they couldn’t find any other reason for my limbs to be turning purple.
By this point I was too scared to use my hand all year as I didn’t want it to swell up again and get even more damage.
In September I had a family bereavement and I finally thought what am I doing. I’m still alive I might have a blue hand get on with it. As soon as I started using it again my fingers were like sausages; red, hot itchy and swollen. She scanned it again on a day where it was slightly swollen when they saw the tensonyvitis. She has never seen it when I can’t bend my fingers for swelling.
There are that many discrepancies I don’t know what to think. Yesterday they said I don’t swell up enough to be inflammatory arthritis. I swelled again on the 10th February needing more steroids. They then said yesterday I should not be swelling while on DMARDs. So which one is it should I be swelling or should I not?
Angioedema wise I have never been able to get a referral for dermatology or an allergist. Even after going to the gp for 7 years ‘we are not at dermatology referral stage yet’
My rheumatologist did speak to immunology and dermatology for me but they wouldn’t see me all they said is take these 3 antihistamines at quadruple the conventional dose. So that’s an additional 12 tablets a day.
The stress of last year has given me bad fibro because I wasn’t believed. But I do have arthritis in my joints too. And now they don’t believe me again. How am I supposed to prove it? That was so traumatic and because I got upset and angry that will also go against me and give them more ammunition this is all in my head and I need psychological help.
Fibro does not make your fingers swell when it rains. It does not make your hair fall out. It does not make your knees lock and wake you up in the night. Neither does complex regional pain disease 😔 it does not give you low grade temperatures or night sweats or a malar rash.
I do want to put a complaint in as that was the worst thing that has ever happened to me. They took me in there and gaslit me, lied to me and humiliated me. I feel like the main one doing the speaking had told them all off and they all had to agree with his opinion.
Hi Tonkie. You have received shameful treatment and feel for you. I am not a rheumatologist but I know about mixed connective tissue disease (MCTD) because I have it. One of my first symptom was swollen fingers. It is rare so many rheumatologists do not think of it and do not do the appropriate test. I saw two orthopedists and three rheumatologists at different institutions before the fourth rheumatologist, a "premier, super rheumatologist" according to my internist, at a hospital that Specializes in joint disease, finally made the correct diagnosis. It has mixed features of rheumatoid arthritis, lupus, scleroderma and inflammatory myositis, but is its own unique entity. If you can, I suggest going to the best, most specialized hospital that you can, even if you need to travel. I wish you the best of luck.
Wow this is a terrible story - im so sorry you were subjected to this inquisition - because that’s how it must have felt to you. I’ll tell you some of my story which has taken me through a 12 year diagnostic rollercoaster which I’m now out of finally thanks to some star doctors and a wonderful rheumatologist.
I was diagnosed with seronegative RA in 2011 and out on methotrexate and others
Then I relocated in 2015 and suddenly was under a rheumatologist who did similar to this terrifying gang of 7 you’ve just seen did to you with one big swipe . He didn’t diagnose Fibro or CRPS but did tell me I definitely didn’t have Lupus, primary Sjögren’s and certainly didn’t have Scleroderma - as I’d started to suspect due to late onset Raynaud’s and severe GI symptoms. He said possibly I’d had seronegative RA, as previously diagnosed, but I had no erosive damage or synovitis after 4 years if so. He said that I might have been on methotrexate and sulphasalazine and Hydroxichloraquine all for nothing he speculated. I asked him about undifferentiated/ UCTD but he waved his hand and said no not even that - no CTD at all. I asked about my high ESR and he said no idea but see an endocrinologist about my hypothyroidisn or even get tested for cancer - not his bag.
The thing he didn’t factor in when taking my immunology bloods was that I was still on a low dose of Prednisolone. He said too low a dose to affect my bloodwork but for me 7.5mg was enough esoecialky after 6 months tapering.
So cut to 6 months later, off everything in another new area, and suddenly my ANA had moved from borderline to strongly positive with a rare pattern pointing most to scleroderma. I always had high ESR but steroids had knocked my CRP down to normal range. The worried GP referred me to another hospital and there I was given a lip biopsy which showed very positive for Sjögren’s, which is very often misdiagnosed as Fibromyalgia or CRPS or even FND.
Now, 9 years on - I’m finally also diagnosed with seropositive Systemic Sclerosis/ Scleroderma and my gut is entirely dysfunctional/ paralysed from head to tail by this horrible but rare disease and the Sjögren’s. I have an excellent rheumatologist who mostly sees RA and Lupus patients. I think I’m her only scleroderma patient. I either see or speak to her 3 monthly, been on an immunosuppressant and monthly all-day infusions of a powerful vasodilator for my severe Raynaud’s for 4 years this month. I still had to travel to London and see an expert professor last year privately for unequival diagnosis of systemic sclerosis/ scleroderma and he also added that this had been masked superficially by hypermobile spectrum disorder/ EDS and likely Mast Cell Activation Disorder. My local rheumatologist was happy to have all this confirmed by such an eminent man but she was already treating me regardless so he was most impressed by her.
I tell you all this, partly because I want to show you, and others here, a few of whom may have been in the original gang who doubted me here, that we must trust our own judgement to know when a diagnosis feels right or wrong. Those here who have Fibromyalgia and accept this do so because it feels right to them. If you read up more and, on reflection, it feels right to you to then that will be because it is. But if you don't then same applies.
Yes a few of are in denial following diagnosis but the majority of us know when we’re being medically gaslit. I certainly knew that RA wasn’t my main disease from day 1 and knew same applied to primary Sjögren’s. I knew that I had EDS as soon as I read up and more importantly I knew it was scleroderma that was evolving, causing extreme fluid retention in my hands and my eyelids (locking shut) after sleep.
No one doubts or queries any of this these days because I’ve been very fortunate to have a terrier-like disposition and have been treated regardless for past 4 years. I have found a few great doctor advocates in unexpected places over the years eg dermatology, oral medicine . Also, and same applies to the earlier finding of synovitis for you, rheumatology is an inexact science - almost an art form. But real/ good science doesn’t lie. Xx
I’m so sorry you guys have all had horrible experiences too. But thankyou so much as I feel so much less alone. I have no idea what it all means. My ANA was 100 Nucleolar? I don’t know what that pattern means.
I’ve really lost my confidence now. I feel like they will have sway on any further investigations. I have another rheumatologist on the 5th March as I cried to the GP last year about my current one ignoring everything I said about my joints.
After further processing of the whole situation I think I know why they want rid of me. Initially my rheumatologist sent me for every test to check for heart attacks, cancers and strokes. She has done 3 scans of my hands. I pushed for X-rays in December as she didn’t want to do them. So I’m costing them a lot and it’s easier for me to be sent to a psychologist. When they finally saw it on the scan and ‘looked at my bloods in a different way’ and got the positive ANA.. I have had questions.. so I’ve cost them a lot in time as well. I think I fell victim to some Rheumatology department politics and I’m trying to work up the courage to complain.
Thanks for your stories on your positive outcomes. I would really like to talk more about my symptoms as I don’t know what autoimmune diseases could be causing them. It took all year for them to diagnose autoimmune reynaulds and I think they might have even taken that back as well now! But I was too upset in the inquisition to think to ask! I’m just so lost with it all and I need to get my head straight and find someone to listen as I’ve only got 3 more months on the Hudroxychloroquine and that’s the only thing that has helped (slightly)
I just can’t believe they got me in there on the pretense of let’s come up with an action plan for when you swell.. and then did that to me. I’m not very assertive and I find it very difficult to speak to doctors and tell them they’re wrong.
It has really messed my head up because yesterday my hand was really aching, so was my heel.. and I just feel like it shouldn’t be on the DMARDS (even though I’ve only been on methotrexate a month) so they have me questioning my own reality. They did this to me all year and then I proved them wrong. Or I thought I did. Thanks for letting me get it off my chest. I’m hoping to find the courage to put a complaint in. But when it’s 6 on 1 you look like the crazy one don’t you 😔
You are definitely not the crazy one to find this very intimidating. I carry nucleolar ANA. Nucleolar is less common and can point to systemic sclerosis / scleroderma - which can evolve slowly, usually starting with puffy painful tight hands and Raynaud’s. The usual way ANA works is that it goes up from top of normal at 1:40 to 1:80, 1:120, 1:160 and so onto any higher number. Mine used to be 1:320 but now only 1:80 which is equivocal but I carry a highly specific ENA antibody as well. As with Rheumatoid Factor, healthy people can carry ANA - mostly at lower titres like yours probably is.
I would join the Scleroderma and Raynaud’s U.K. charity’s HealthUnlocked community and Lupus U.K. and post the same post as they will know a bit more on these communities I would think. And many have been dismissed there too for years prior to diagnosis. ANA isn’t used to diagnose RA and isn’t really diagnostic anyway - just a pointer that something may be going on with these symptoms. There are more specific ENA antibodies they should be running for you even if your ANA is only borderline. Especially as nucleolar pattern is more rare.
The inquisition of 7 rheumatologists as a panel all dismissing you is awful regardless - but MCTD and Scleroderma are rare connective tissue diseases so general rheumatologists specialising only in RA and Lupus may not know enough about it and - like a bad jury - have added things up badly and just got it wrong.
And please don’t think about yourself as expensive just for asking question as abd being given basic tests and treatments! If you knew how much some of the treatments I and others here have had or get you’d know that this is just about medical egos and clearing their decks, streamlining clivic lists and risking getting rid of more complex patients who often have rarer autoimmune diseases and are harder to diagnose and treat. Hang in there you are 100% entitled to make a formal complaint about this inquisition of 6:1X
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Week 16.....still nothing
Nurse fuming 😤 
RA pain increases as day progresses
