After having my NHS rheumatology appointment cancelled twice in three months, then unsuccessfully trying to get a private consultation (turned out the hospital I wanted to go to don't actually do private consultations), I finally got seen by a visiting rheumatologist at my local hospital this weekend.
After a brief but thorough physical examination, she is convinced my seronegative inflammatory arthritis is under control and that I have in fact developed fibromyalgia.
It kind of knocked me for six. Both my mum and sister have fibro, so I guess I have a genetic predisposition, plus I have some of the other non-pain related symptoms such as tinnitus, poor circulation and sound sensitivity. The rheumy also thinks that my inflammatory arthritis has more than likely triggered it in me, and said that people with RA etc. often end up getting fibro too.
She wants to put me on amitriptyline, which I'm nervous about. She's also booking an ultrasound for my feet because one of my toes has started to sit on top of the other, and she thinks that's possibly caused by previous damage when my disease was active.
What she can't explain is the fact I still get redness and inflammation in the lower half of my fingers at least a couple of times a month that lasts for a day or two. She said the redness is not typical of seronegative arthritis, and when I tried to show her photographs I'd taken, she wasn't interested in seeing them.
Instead she's ordering a uric acid test to see if I also have gout. I'm not convinced that I do. I don't drink alcohol or eat red meat, kidneys are fine and my BMI is where it should be.
The thing that flabbergasted me was that after the end of a very rushed appointment, she told me I should exercise more than my daily twenty minute walk (can't manage more because of my feet), and suggested I take up a martial art like karate!!! I'm a 48 year-old man with chronic pain in my feet and hands for crying out loud. I am not the karate kid!
That single comment made me doubt everything she'd said before. Now I don't know what I should do. Part of me thinks I should give the amitriptyline a try. Part of me thinks I should push ahead with trying to get a private consultation and a second opinion.
Or maybe try the amitriptyline and if it doesn't work then go for a private consultation.
What I certainly won't be doing is chopping bricks in half with my bare hands!
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mjrminor
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I honestly don't know if I could make that happen at my hospital at the moment. They are short staffed and only have two rheumatologists at the moment, which is why they've brought in a visiting one to fill in the gaps.
The rheumatologist I was supposed to see cancelled on me because of having to self isolate, and it took 3 months to get a second appointment with them, which was cancelled again for the same reason. I honestly think this might be it unless I either change hospitals or go for a private consultation.
Part of me believes the fibro diagnosis. It's the rest I have an issue with. It's never easy, is it?
I got diagnosed with Fibro nearly two after my RA diagnosis and now have Sjogren's and Raynauds too as it has been a bus like effect. I tried not to take other meds apart from my RA JAK and painkillers etc but I had to give up as the pain, I find with fibro is so intense plus my sleep disturbed, that I got to the point I was hardly sleeping. I am on pregabalin and started very low one morning and one night and I have only just gone to 2 at night BUT I am starting to sleep better.
I find like it has been this weekend weather affects me badly so windy weather and boy I am curled up in a ball.
The one thing my Rheumy chap told me to start doing was getting someone to press my trigger points to relieve pain. Now its not a pretty scene and usually a lot of cussing at hubby but it does help a little. So might be worth a try too.
The lack of sleep is the worst, isn't it? My GP currently has me on codeine to take before bed, which helps me nod off but I'm still waking up around 4 every single morning and having to take more to get another couple of hours sleep. Then feeling groggy all morning, which makes work difficult.
The trigger points is interesting - I'll have to look up where they are. The rheumy just gave me a fibro leaflet then sent me on my merry way.
I have RA and also recently developed fibromyalgia. I’ve started taking amitriptyline. I’m sleeping better at night and now I’m taking it earlier in the evening between 6 and 7) I’m not too groggy in the morning. I only take 10mg now but started on 5mg. It could be worth a try.
That's hilarious!!!!! Although...they are now dishing it out to covid patients in recovery. Seriously - obviously not long term but there are promising results.
Sounds horrendous. Karate sounds quite extreme doesn’t it - especially for someone with inflammatory arthritis and possible fibro. Do you think you look fitter than you feel if she is suggesting something like that?
Years ago I was given amitryptiline when I actually needed my levothyroxine increased. I wasn’t convinced but I took it for a couple of weeks and had phased it out by the time I got to see my endocrinologist.
I wouldn’t say it did much for my thyroid and my endo just rolled her eyes when I told her about it and said it was a waste of time but in spite of me worrying about it I’d say it didn’t do me any harm and I didn’t get addicted to it either.
I mean, possibly I look fitter than I am. But still - I don't know what she was thinking! I definitely think I'll try the amitryptiline. It helped my sister for a few years. Now she's on pregabalin.
I think Sylvi is right - speak to PALS and try to get another appointment with a different person. A rheumatologist suggesting a patient in pain take up karate is pretty bad. Hopefully they will find you someone else and in the meantime if you try amitryptiline then you’ll have met her half way. Bizarre suggestion though.
I despair at the ignorance of some Drs. My rheumatologist suggested yoga before bedtime. I am crippled with sciatica, looking forward to more surgery and was told by my neurosurgeon not to do anything that irritated my sciatica. Well that rules yoga out. My joints are sore and inflammed. That rules yoga out too.
She also spoke of the stages of sleep ....completely incorrect information.... (I used to teach sleep, I'm informed).
Karate ? Really? Lets just say it straight... uninformed nonsense.
I believe they hear / read up on something and then suggest it to patients without engaging their brains at times.At my recent F2F with my rheumatologist I said that my neurosurgeon told me the facet joints in my spine were inflammed, shown on the MRI, and asked her several questions about them. She commented...quote...what would he know, he is only a surgeon ? (I had to ask my partner if I had heard her correctly on leaving the consultation...he confirmed that I had).
The arrogance is quite unbelievable.
The neurosurgeon, is much more skilled in my view, is the most down to earth man, a fabulous bed side manner, has time for his patients , answers questions.
When I saw him a couple of weeks ago, he was a breath of fresh air by comparison to the rheumatologist...right let's try a spinal block, it may save you from immediate surgery. If it doesn't work, we are probably looking at surgery, but let's try and get you more comfortable. Spinal block undertaken 6 days later, unfortunately it doesn't seem to have worked. I've to ring him with an update on 14/2.
He didn't suggest karate or yoga. Rather keep as mobile as you can, without aggravating your symptoms, if it hurts, stop and get yourself into a comfortable position, and I'll speak with you after the spinal block.
Bloody hell. I'm sure there are lots of good rheumatologists out there - I even met one once who diagnosed me. Unfortunately he left soon after. Thank goodness for your neurosurgeon though - at least someone is making sensible suggestions!
My rheumatologist can either be very helpful or very dismissive, you just never know what you are going into. I always provide a written update so she cannot say she hasn't been told. She is always polite when my partner is with me.
🤣. Sorry, some people are hopeless. I would not do the karate just yet!
I would however advise you take the amitriptyline. I take 20mg at 7pm and sleep like a log. It has helped considerably with nerve pain too. I get tinnitus and am sound sensitive, but these are brought on by stress. Not there if I’m not. In fact a lot of my symptoms have gone since I medically retired! Anyway. Good luck with it all x
Btw. Maybe read up on Reynauds.. (I am not a medic).
I think I'll definitely give the amitryptiline a go - I'm desperate for a good night's sleep. It's literally been months. I'll look into Reynauds too. Thanks.
Boy do I understand I too am s- negative diagnosed 5 years ago . Fibro added in September last year but had it for quite sometime with hindsight Basically diagnosed myself. I started on amitriptyline but it didn’t suit me made me too sleepy so now on pregabalin which is helping. Yes exercise is constantly thrown at me too . Like you feet bloody hurt even with insoles ( they do make a difference but still hurt) hands not the best either. I’m also exercise intolerant. If I do slightly over my set exercise I have days or even weeks of repercussion where I’m unable to do anything.
Like Deeb said weather plays a huge part in my flares. My advice is try any medication in the hope it helps if not just stop with your gps help and try something else . Life too short to live in pain .
I have orthotic insoles too and find they help. But I'm not sure I'm ready to perform karate kicks while wearing the. Haha. I'm going to try whatever meds they throw at me. So tired of being in constant pain. Thanks.
I am fighting the fibro diagnosis ( don't ask me why, think I'm finding it hard to forget some medical professionals dismissing fibro as an actual "thing").
My consultant said to try walking ( she acknowledged i can't walk too far, but I shoul start small and build up), meditation, mindfulness. She said amitriptyline will help but I've not taken any as yet as I dont want to. She said I could take other medications if I felt the need ( think they are anti depressants but at lower dose than they would be for depression itself).
So far I've been shite at doing any of it because I'm in loop of any little thing will trigger me feeling terrible. Yet if I don't do these things I guess it will continue 🤷♀️
I must try harder.
I attained my brown belt in a form of Karate many years ago and the thought of doing it now makes me laugh. Even back then in my 20s I would get knackered and fart with exhaustion 😅 I dread to think what would happen now, probably crack my own fingers off in 0 seconds ha ha. Sorry shouldn't laugh but was your Dr having a moment when they recommended karate ? 😅
I've read alot of people get on well with the medication especially for sleeping. I'm going to try the meditation and go from there.
Thanks for the laugh about tired farts. Haha. Sorry to hear you're going through something similar. I'm also reluctant to try the amitryptiline, mostly because I' m worried it's going to turn my brain to jelly and make it hard to work. But I'm so tired from sleep deprivation that it's pretty much mush anyway, so I'm going to give it a go.
I hope you find some answers/alternative diagnosis if you think you don't have fibro. As for medical professionals thinking fibro isn't real?, don't get me started... I had a gp tell me the pain that turned out to be inflammatory arthritis was all in my head. That stuck with me, so now getting a fibro diagnosis is feeling a bit triggering.
Sounds like you've had a battle from the very start with medics and your diagnosis, hope the amitriptyline works 👍 Sounds like timing of when you take it is key.
You hit the nail on the head there you head is already going mush anyway. I think we all hope there is a way round it without medication but as my GP said start low as you can and see how you feel. I would say first few days I was woolly but it got better.
Oh no, she suggested Tai chi as well, which I thought was a good idea. But she kept going on about Karate and how martial arts were good to exercise the whole body. Which would be fine for a totally fit younger person.
I have fibromyalgia and inflammatory arthritis and Tai Chi was a big No. all I did was slowly move and think about how sore I was every minute. I have been liking qigong though. Maybe try that if you are sore and gentle movements help. Hope you get in to see a doctor who will check into your finger situation. The doctor you saw is totally uneducated on the pain levels you endure. Was she a young doctor with no experience???
Wow. That is scary that she has been around so long and suggests karate. That is simply a really sad story. I have never been offered any medication for my fibromyalgia. I hope it works for you. I am not really into the chi and I don’t feel my chi but I try to feel the inner peace that qigong brings. They say the central nervous system is on high alert with fibromyalgia so I just try to relax while doing the movements. Who knows if it is working at calming my central nervous system but at least it is gentle. Maybe you would enjoy the Tai chi as my rhuemotologist suggested it to me too and I guess others like it. I think there are different types of both qigong and Tai Chi. Enjoy checking out these arts while staying away from karate!!!
Wipe on wipe off! I suggest that it is the fluid exercise that might be good for you but perhaps swimming might be kinder to your body if not your soul. Best of luck🌻
Thanks Green. I've thought about swimming, but I live in a tiny little village with the nearest indoor pool too far for me to get to. I'm definitely thinking about looking at online Tai Chi classes.
Try CBD gummies? Or slow stretching towards the whiskey bottle? My hubby did karate for years and it caused arthritis in his neck so be very careful. Speak to your own GP for advice before you begin anything 🥰
God I miss whiskey. It was my favourite tipple before I was forced to give up alcohol thanks to having silent reflux. But good advice nonetheless - I have to check in with my GP about the fibro anyway, so I'll ask about exercise. Thanks
Tai Chi For Arthritis is very good. I had some lessons but practised with the DVD (think that it's also on YouTube) and really could have done it by myself.
She seems to be wrong about the gout. My uric acid has been sky high for years, well outside the range, and I do not have gout. Gout can only be definitely diagnosed if you have crystals and these are identified by drawing blood and examining at the lab. Also, people with gout have an inherited gene which can be tested for, and I think if you do not have it then you do not have gout.
I was given a diagnosis of gout by a private rheumatologist purely on the basis of an extremely high uric acid reading. Sometimes doctors feel they do not need to go through all these tests for gout because they can see so many obvious symptoms and are usually right but to base a diagnosis purely on uric acid readings is wrong.
The guy I saw was completely wrong - my physio fell about laughing at the gout diagnosis. I actually had RA which was confirmed largely by imaging (u/s and MRI).
Re the amitriptyline, this is an anti depressant. It is prescribed for pain relief. I was prescribed it and it had no effect on pain at all. It is pretty harmless except that it distorts the vision, and long-term this side effect is permanent - I know a few people who have suffered this. As an anti depressant, it takes three weeks to work and so far as I can see it is only used in favour of other drugs because it is so cheap (about £1/month).
Others will know more about fibro, but I thought it largely affected women in their 60s onwards. I have a friend with it and she is now almost confined to a wheelchair. It is extremely painful and disabling and I think worse than RA.
By the way, the private rheumy I saw asked me to fill some forms in by hand - directly after me telling him my hands were so disabled that I could not write! They are largely on auto pilot, I think.
Thanks for the adivce and information DelicateInput. I'm not sold on the idea that I have gout either. It just doesn't add up to me.
As for fibro, it does mostly affect women - around 7 times more than it does men, but then so does RA. My sister developed fibro at 40, my mum at around 45. Apparently it typically develops between the ages of 30-50, but can affect anyone at any time.
I think if I were you, I would try the amitriptyline for a month and then see a rheumatologist privately. Otherwise the private rheumatologist might tell you to try it for a month and then come back and you end up not only delaying treatment but wasting money on a further appt. That is what the guy I saw did. If I were seeking a private consultation again, I would aim for a consultant in their 40s/50s. The guy I saw was over 70 and I find them very rigid but not quick enough. My NHS rheumatologist was late 40s, very sharp and quick (and could hear me as a lot can't!). He suspected RA from the very outset and this was confirmed by imaging. When I told the private one I was worried I had RA, as it was also familial, he got into a temper and said I did not have it - I thought I bloody well have. It put me through a lot of stress and I lost a lot of money because I could not work for nine months - and only then after I had electro acupuncture.
It sounds like you've had a hard time made more difficult by that rheumatologist. I think I'll definitely try the amitriptyline for a month - there's nothing to lose in trying. And like you say, if it doesn't work then I'll go get a private consultation.
Hi - I agree with Sylvi below, you need to get in touch with PALS.
Her suggestion of karate is ridiculous and insulting but she is right about exercise.
I do incidental exercises and what the physio has told me to do and it all helps. I also walk for about an hour every day with the dog.
I take hydroxychloroquine which takes a long time to work. I had a break from it for a while and then restarted it recently at the same time as going on hrt (primarily for migraines - it didn't work) and I believe that the combination of the 2 is responsible for a big improvement in symptoms.
To clarify, I'm 51 and didn't have any perimenopause symptoms but I recently posted a link on here about the established raltionship with falling oestrogen and autoimmune conditions including RA and Inflammatory Arthritis. So although the patches have done nothing for my migraines I'm staying on it for the Inflammatory Athritis!! God knows why this isn't common knowledge and why rheumatology haven't got on board with it.
When I was first diagnoses I had hoped that it might show that migraines were a symptom of Inflammatory Arthritis, but the hydroxychloroquine has done nothing either and I'm finally going to be starting CGRP injections soon.
My BMI is also where it should be and every consultant I've seen has told me how important that is in controlling flare ups. In other words it could all be a lot worse.
At my hospital it is possible to refer yourself to podiatry and that is probably another thing you could do and get some specific advice about how to live with your foot problems in the meantime.
Thanks for the advice. I've seen podiatry before, who referred me to get orthotics - but that was before the problem with my toe started developing. I'll wait for the ultrasound on my foot then ask to be referred again - I don't think they do self-referral at my hospital unfortunately.
Nope, she also mentioned Tai Chi, which I thought was a good idea - but kept going on about how karate and martial arts are good for all over body exercise.
As far as I know amitriptyline is one of the go-to drugs to help with fibromyalgia because it helps to reduce pain as well as help you get better sleep. It's not a cure all, but as part of an overall programme of pain relief and other therapies, it's mean to be quite useful.
Karate 😳😳😳 just seen this and nearly fainted lol I tried tai chi for like 20 mins and could hardly move the next day 🤣 but then I’m very unfit hahah x anyway hope your going on ok 👍
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