Oh well peeps, I went for the fought-for second opinion yesterday. Was so anxious I thought I'd throw up. Before I went I had two fears - 1) the consultant I wanted to see wouldn't be there 2) he would be but he'd just confirm what rheumy one said. Well he was and he did. He was kind and listened but still said that, apart form the pain in my hands and big toe which is osteo, all the other joint pain is classic fibromyalgia. Dismissed completely the chance it might be any form of spondylitis as says that presents differently. I'm only just beginning to learn about fibro but from what I can tell it's as much (if not more) about muscle pain as it is joints and I seldom have anything but a fleeting twinge in my muscles. I asked why I might be getting pain in my buttocks, heels and balls of the feet - none of which on fibro chart - and he looked at my feet and said "well there's not much padding there". Now if there's one thing I know it's feet! I've looked at and worked on very many pairs and I'd say mine are distinctly average, seen fatter, seen much thinner. So there we are. Can't really argue with the man as he's written papers etc on spondylitis and sero-neg so unless anything else pops out of the woodwork to overturn his decision I have to suck it up. He's asking my GP to take me off amytriptiline and trial me on pregabalin for pain and sleep problems and asking the physio to arrange hydrotherapy. Otherwise, bye you're on your own although he did urge me not to feel on the scrap heap and to consider antidepressants if I was feeling a bit down about the situation! I wonder why I might be feeling down. Awaiting a bone density scan GP is arranging to see if there's any obvious reason for me losing two inches in height so there's a very faint chance that might throw something up but I'm not holding my breath. Had a quick look at the fibro blogs and the first one I saw was from a chap who had taken an overdose in September as he was in such despair with the condition - read no further and ran away! Will take a deep breath and go back to see if I can garner any advice or info, especially about DLA - I suspect my chances will be less with my new diagnosis but time will tell. Thanks to everyone who's kept me going while I still thought I was sero-neg, I hope I find such warm and lovely people on the fibro pages. Keep well my friends. Pat x
And it's goodbye from me ............: Oh well peeps, I... - NRAS
And it's goodbye from me ............
Hi Pat, in a way I suppose it is good news that you don't have RA which I wouldn't wish on anyone. Good luck with the fibro treatment - there are some members on here who have it as well. I understand it relates to muscles rather than joints. I am sure you will find help on the fibro pages.
DLA is always worth applying for - CAB can help with filling in the forms. You will need reports from your consultant and GP to go with it.
The bone scan will show up any problems with your bones and could well give the reason why you have lost height. If there is a problem, they will almost certainly put you onto calcium supplements and vitamin D. I have to take that as I have a slight thinning of bone in my right hip and thigh although spine is fine which showed up on my scan in December.
Anyway best wishes for the future and thanks for your support on the RA pages. lavendarLady xx
Thanks LavenderLady, I thought it was all about muscles with the odd joint pain so was surprised when my joint pains were diagnosed as fibro without accompanying muscle pain. I know it might seem odd for me to be distraught at having my RA diagnosis overturned but I had treatment options and I now don't, apart from pain a degree of pain relief. Thanks for the advice re CAB - I'll contact them once I've recovered my equilibrium x
Be careful with the antidepressants. I found that after having some prescribed and not taking them, the hospital had me down as suffering from Depression. I mentioned this on another blog and people agreed that this isnt helpful. Sometimes drs tend to dismiss you if they think symptoms are down to that. And very best of luck with the new diagnosis - hope the hydro helps - I loved it!
I agree with this warning. I have a friend who has had fibro for many years now and she gets really frustrated by how much they link it to depression and try to only treat the depression instead of her pain.
Good luck in the future Pat - hope u find some relief.
Just because you don't have ra, this site covers all forms of arthiritus so you don't need to go. I have ra and fibro and i am still here. There is a site on my communities called fibraction have a look there. Please keep us informed of how things go with you. Love sylvi.xxx
Thanks Sylvi. I found one called FibroAction - is that the same one? Feel pretty lost today. Had to call in sick as still trying to shake off a cold and keep crying, not the sort of thing sick people want to see when they visit their GP.
Yes it is and you can get it by going onto ypur communities.xx
O0H misty dont go stay I have RA and fibro x
I have both of them also, can I just say, I would not be in such a rush to come off the amitryptoline, as it raises your pain threshold and help reduce the amount pain, it also helps your muscles to relax at night, check out the pregabalin first as sometimes it can make the Fibro seem a lot worse than it is and you are right about the Fibro being muscular and not boney but the Fibro can make it look like the joints because of the muscle fibres.
Take care and I wish you well. You might as well keep hanging out here as a lot of peeps have both RA and FMS, The Fibromyalgia charity has now moved to Scotland but their website remains the same. fmauk.org.
Philip
Hi Misty - I would say to go wherever you feel most at home re sites. Probably the Fibro one would be more helpful for now if this chap is so certain that it's fibro you are suffering from - and he should know if he's a spondy expert I agree.
The fibro site will be able to make more sense of your symptoms and make you feel more understood though because there would be more people who can relate to your experiences possibly but just try it and see how you go.
I have the strangest of symptoms on and off that don't seem to relate to RA directly and very rarely correspond with the key symptoms outlined if you google RA. I've had generalised ache and this includes muscles and these weird surges of deep heat that none of my health professionals comment on but often wonder if they will turn round and say it's Fibro rather than RA one day.
The only thing that maybe does confirm that I have inflammatory dimension is my consistently high inflammatory markers and a low positive for rheumy factor. Other than that I'm always wondering and infinitely suggestible!
Good luck with your new Fibro journey and I hope you find that Preglabin or perhaps increased dose of Amitriptyline will help you and at some point it just flies away into the ether and leaves you free from pain. I completely understand, despite the potential seriousness of RA, why it is upsetting to have a diagnosis of fibro rather than RA and to feel abandoned by the health professionals who had been seeing you. But I think Fibro is being increasingly recognised within arthritis circles so hopefully there will be some more effective treatments coming soon. Tilda xx
PS and to those who suggest Misty keeps coming here too please bear in mind how isolating it could feel to have everyone talking about their DMARDs and Biologics and not to be able to join in or relate. It's not for us that she needs to search somewhere else to go - Misty you are very much wanted here because you've really helped others - but so that she can ask a whole host of questions relating to this condition and be in same boat as others rather than always feeling "oh here's another question relating to MTX or Humira.." or RA - or whatever. Tilda xx
Hi Misty, I agree with Tilda. Whenever you feel like blogging on this site, we shall be very pleased to hear how you are getting on. Good luck with everything. LavendarLady xx
Yay Misty, I can't help thinking that leaving suddenly when you are feeling down might be a bad move because you post a lot & obviously know people here & are amongst friends on this site. Loads of blogs etc. are more about how people feel than anything specifically medical, anyway. And as others have said, fibro is such a frequent accompaniment to RA that many people will have experience to share with you. Some sites are quite dry compared to this one which is particularly friendly, I think and that can count for a lot in terms of keeping our spirits up. Hope all becomes clearer & more settled, Luce xx
Stick with whatever sites and forums your symptoms fit - whether or not that is the "right" disease or not, and don't leave here until you have found something that is a lot better for you, or this forum stops being useful.
As far as the fibro vs enthesitis goes, it sounds like its not worth fighting the current rheumatologist over right now. If I were you, I'd also try and find a fibro forum and as well check out one or more of the spondyloarthritis forums (the US ones are the best, and are really international) because there will be a lot of advice on them about how to deal with day to day stuff.
If your sacroiliac joint starts really getting bad further down the line, ask your GP if they will organise an xray and if there is any evidence at all of sclerosis or erosions, then definitely go for another referral (preferably to a different rheumatologist!).
If you get really bad "tendonitis" or "enthesitis" ask your GP to organise an ultrasound specifically to look for enthesitis - its a far better way of spotting it than xrays which don't usually show anything until a long way down the track.
Also, if you haven't already tried taking NSAIDs regularly, and at full prescribable doses (which is higher than over the counter doses), ask your GP about that. If you get significant relief, then thats another pointer that it is inflammatory, and isn't fibro.
Thanks earthwitch, tried almost every NSAID out there during the early years and they caused a lot of stomach problems. Currently on cox2 inhibitor and yes, they have worked but as you said, not in a position to argue at the mo x
You don't have to go Misty, only do so if you feel you are not getting anything out of the site anymore.
You know i reckon i have had ra for about 11 years just after the birth of first child, i had all the symptons then but it was put down as exhaustion and i tripped back and forth with similar ailments before i was diagnosed 2 years ago. I was told more than once it was psychological and i spent a fortune seeing a private therapist!!!!!
I really do hope you don't have ra but i know the frustration you feel when you know there is something but you do not have a diagnosis of what it is.
As others have said quite a few people on here have fibro as well.
I hope you feel a bit better after a good nights sleep.
Thank you everybody. I'm going to hang around for now as, no matter what the label, many of the symptoms are the same. I have a nagging gut feeling that the rheumies are wrong but short of paying privately to get MRI or some such I'll just have to go with it for now. Had a fair few eye leakages throughout the day - some from feeling sorry for myself and some from the lovely messages here but starting to feel a bit of fight returning xxx
hi misty
dont go your input into this comunity is verry worth wile to people on here cos you may see a blog that you may be able to help with.
regards feet i found e45 helped a bit to keep me feet supple just by chance and passed it on
so its that sort of thing im talking about the least thing could be of great value to another member whith help
BABY PLEASE DONT GO who sank this now?
Just because this specialist says you do not have Spondylosis ( sorry can't spell it!) It really is just his opinion.
I see no reason for you to leave the site, it is a great help and support, I myself am undiagnosed at present, including fibro, although it has been mentioned, and I am on both sites and find them very helpful, so please keep on here too, the people are amazing, they help me get through the bad times.
Do try to take care of yourself,
with great sympathy, Cazx
hi Misty
well as they say the decision is yours!!!
You have a lot of unanswered questions at the moment and I think with any illness we all have a lot of emotional and feelings in common. So we have that in common.
You are in pain, we have that in common.
You have to visit docs and go through all that trauma, We have that in common.
You have a great sense of humour , we have that in common lol!!!
So anytime you want us all, we are all here and we all have a lot in common!
love and hugs Axx
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