Hi all,
The new rheumy I saw on Tuesday reckons I have fibromyalgia rather than RA at the moment. I know that fibromyalgia isn't strictly speaking an inflammatory condition (even though the symptoms it gives rise to mimic inflammatory joint conditions), but can you get bursae and bursitis with it, as I have several sites where I think I may have these, but haven't read anywhere that fibromyalgia can be linked to them?
Sara x
I don't know Sara because I don't have fibro but I believe there are many areas of overlap and plenty of people on this site seem to have both. I thought the problems were mainly in your hands - isn't that rather unusual for someone with fibro which I thought was mainly in soft tissue and muscles and larger areas? Did your new rheumy say when they would see you again?
You do seem to have been waiting for a long time for a diagnosis but I guess that's just the way it goes sometimes. I see my rheumy this afternoon for first time since November when he gave me a provisional diagnosis of RA. I've so many things to tell him and ask him and I don't see him until 5pm so I hope his brain and my brain can cope! I stupidly took an Amitryptyline last night to help me sleep - along with an anti-emetic - and I did sleep until 9 am but I'm still tired out and I've got to drive to town now for an afternoon of meetings followed by rheumy - hope I don't fall asleep on his couch when he's examining my joints zzzzz! TTx
Hi Tilda,
It did start off in my hands, back in September last year, but after a few months, it gradually crept into all of my joints. Mostly, it's my hands, feet and general hip/pelvic area, but my elbows, shoulders and knees have a damn good go too, sometimes! And I must admit, the concentration loss ('fibro-fog') and exhaustion seem to fit for fibromyalgia, but I don't know, really.
The rheumy said, if the bloods they took on Tuesday were 'normal', he wouldn't see me again, but that I was to monitor my joints carefully for signs of inflammation. He didn't say what he'd do if the tests were abnormal!
That's the trouble with meds that make you sleep - I take co-dydramol at night to help me to sleep, but I wake up feeling like a zombie. Hope you're in a fit state this afternoon!
Sara xx
I have both fibro and RA. Just a wee tip my doctor gave me as far as Amitryptyline is concerned, take the pills around dinner time,that way they start to relax you and you dont wake in the morning feeling like a zombie. Hope this helps anyone who has this problem.
I've had to stop taking it for this reason - even 1 tablet seems to wipe the floor with me in the mornings these days. My GP said the same thing as yours so I only use it when I'm flaring nowadays although I think it's a great drug for neuralgia type pain and getting a good night's sleep with. TTx
hi sara im new to this site no diagnosise only patela problems and other like bursitus
im going to see a rumatologist and pay my cousin had this when to see this guy and he thought when i tell him hes going to think im a nut case
turns out the guy said yep i know what this is footballers get it he had it all over the place for 3 months from one joint to another.
he said im going to give you an injection because what is happening your imune system is going against you jab in the bum kenaloge injection 4 days later he is walking no problems after that he informed him to keep taking zink tablets i think it was to keep his imune system up (he said best 170 quid i ever spent.
yep my bloods turned up normal normal this normal the other.
knees swell then whent for me feet then me left hip cos im compensating then the hot sweats at night thyen neck cracking and little red patches on hand joints that are going down now god people think your a nutter dont they but all the time its your imune system fighting you cos its gone hay wire i cant walk so far now as i expect you are having problems to try ice them warm towel on knees then ice then warm towel this cools new blod supply then when you warm them puts in new blood supply
how long have yuou been like this me 4 months and getting no wear.
if you put foot down on floor and push forward with your knee does the knee move forward at all or twist if so bee careful on that knee as the ankle will start to hurt next
regards john
Hi John,
I've had the problem for 10 months now, and basically had a pretty naff experience with the first rheumatologist (don't know if it was me not explaining well, or him not listening), so I went for a second opinion this week. The theory this time is that it's fibromyalgia, not RA, but I'm waiting on more bloods to be sure.
Yes, I can certainly sympathise with not being able to walk as far as I used to, the red patches over my joints, and the intense sweating/overheating! I also get lovely swollen blood vessels in my hands and feet when they're painful, so I guess that's linked, too.
My knee doesn't move forward, but I do have too much rotation at my femorotibial joint, so that can cause problems if I swivel and don't move my feet! But my ankles hurt anyway!
What's the verdict for you, or haven't they sorted you out yet?
Sara x
hi sara
please keep in touch its nice to talk to someone who has reasonably the same problem
ya im not improving much spent quite a bit of money on this
mri knee showing nowt when i know me patela slider is like breaking up even the wife thinks their is nothing wrong with my knee and now its in both my ankles are also giving way a bit.
to get to the shops i get in the car down the road and walk in then out and thats ya lot as far as walking is conserned now.
they did tell me i had slight bulging disc at l4l5 well thats never given me a problem since 1991 but ya never know if this is causing that.
i am thinking of going to another rumotologist cos im sick of sitting round now on me own i would neverr stop the wife from doing her own thing as i have motorcycles that i build but thats gone up the shoot now.
at this moment feet have gone cold does yours do that?
the sweat pumped out of me this morning woke me up even me legs where sweating if someone told me i had bone canser i would say thanks and i would not have a problem with that but its these doctors who fob you of with link you wife and walk slowly that does my head in all because i will find ways of walking somehow on a piece of wood strapped to me leg (thats what becomes of being a x nuclear engineer. we try to find the problem on the internet but their is so many thinks the same as your condition its frightening bet you have done that.
my complaints
bothe knees hurt
feet hur
left ankle feels like giving way
kneck cracks
ribs hurt sometimes
little red patches came on nuckles
wrist and shoulders
just feeps like somthing is attacking anything thats a piece of cartlidge
all this from one knee going down after me swimming at the gym hard to belive.
but no verdict it appears im on me own now after the (walk slow) with the rumatologist. im just deciding weather i go seeing this other guy and pay are you paying for the second opinion
tel ya what i have done to see what happens ordered a dla claim pack that might shake them up when i put their names on.
how far can you walk me im about 200 yards in pain from 3rd step
regards john
femorotibia joint thats at the side of the knee and you have rotation on this have you had mri and shown doc this and their not concerned thats like mine is it swists inwards and that is i think giving you the ankle pain sara mines left leg rotates when ya stand and walk does it
sorry so many questions
Hi John,
First off, I'm not paying for a second opinion - if you're unhappy with the first rheumatologist, then ask your GP to send you for a second opinion. Mine did, and the paperwork for Choose & Book came through very quickly. Then you've just got the task of researching other people's experiences of the consultants/departments you've been offered, and choosing who to see. Also, Choose & Book appointments are generally within a month, as that's how the system works, so you'll probably get seen quicker.
Secondly, have you been sent to physio or podiatry? I'm a podiatrist myself, and the feet, ankles, knees combined with hypermobility at the femorotibial joint might all benefit somewhat from gait analysis and a prescription of some decent orthotics. It won't cure the problem, but if it can take some of the strain off, and the physios can stabilise the joints a bit by building up the muscles, it might help you to walk a bit better. Even the right insole material will help, as it will shock-absorb where your foot joints can't. Plus, the physio may be able to tell you if it's the disc problem affecting you distally, or parts of the lower limb affecting everything else.
I walk a fair distance, but only because I'm stubborn! My feet hurt just walking to the toilet in the morning from my bedroom, and I need a lie-down after my shower! I tried a 3-mile walk into the town centre a few weeks ago, and it damn near killed me for the rest of the weekend! But, at 32, I'm not quite ready to let my boyfriend wheel me around just yet.
I had hand & wrist ultrasound scans (looking for synovitis and arthritic change) with the first rheumatologist, which came up empty, and he diagnosed me with 'arthralgia', which I knew was a symptom, not a disease, hence my desire for a second opinion! The current chap has said - pending the results of blood tests taken last Tuesday - that it's likely to be fibromyalgia. It's a tricky one to diagnose, as the symptoms are non-specific, and there are no clinical diagnostic tests, apart from 'pressure point testing', which is subjective. But it might be a possibility, if they're not coming up with much else. What bloods have they done, and what results did you get?
Sara x
HI Sara THANKS FOR REPLY GLAD I FOUND THIS PLACE.
bloods done ESR WHITE CELL COUNT Hb INR CRP U&eS AND LFT's ALL NORMAL
BENCH JONES NOT DETECTED IN URINE
NOT BEEN SENT TO PHISIO OR PODITRY
PODIATRY IS THE THING IM THINKING OF GOING SEEING and pay for as my left leg feels about 1/4 inch shorter than the other as im using this to compensate because its the strongest of the 2 legs even though it not that good. and under both knee caps feel dryed up today but not stiff when i get up in a morning
lower back was bubbling last night and feels dry at the bottom today
feet also feel dryed up bones and can go cold then red hot.
i cant do more than 30yards before i start feeling the strain now.
dont know weather i said but i always had clunking inmy kness when i did quad exersises but it never bothere my walking then when i came out the swimming pool that day stood in the shower and the pain i felt in the left leg below the knee cap felt like i was going to shear it off below the knee where me quad finishes at the other siide of the knee cap so i rested it it swelled up then i walked a bit other started off not so bad but sore like bursitus
then it was all down hill in 3 months to the extent that other things started playing up
i still wonder if i have some sort of sacral tilt that is causing the problem but i would not have me back cracked just in case it has somthing to do with the disc l4l5 which has been out since 1991 and not given any problem or pain.
and the mri from hope hospital said that
but because i cant walk that far me bum well i can feel me coxy when i sit down and cant pul quads. so i go for swimming on me back and then side to side swimming no breast stroke
it would make sence if me cartlidges are damaged that me legs have gone thinner and the quads reducing in size
so im at a loss what to do?
im stubborne like you i keep trying to walk some distance but i might not make it back for the pain and the knees swelling up
i have contacted a poditrist who want about 400 quid for gate analasis and shoes would it be worth it i ask myself cos i would do anything to be able to walk round proper or even to the shop.
like i said i also on the private knee specalist when to have been checked out for ms he didnt think i had that
ive had this now 3 times other 2 pulled it back but at 61 now my wife says im older and she is right its a lot harder than last time thats why i am having problems.
never had any pain or out only a few twinges in winter now this happens.
it just feels like me bursas on both legs are gone and me knee cap moves forward when i press me leg on the floor
regards john
in all honesty, John, I'd generally go through the NHS if you can, and save your cash for if that doesn't work! Biomechanics is a bit of a grey area (most of us who are honest will admit it's trial and error, especially in the more complex cases), so you could be throwing good money after bad by going private first. Plus, if you're lucky, you may only need inserts, which would mean that you can wear your own shoes (space permitting) and not be restricted to bespoke footwear.
I'd also be a little concerned at the sudden pain, and the nature of it - I know the investigations have come back normal so far, but it does sound like it might be a minor tear of the patellar tendon. Obviously, without examining the knee, I'm not really in a position to do any more than suggest options, though!
You are older, and it will take longer, but you can't really afford to give up - you're only 61, and there's a lot of stuff you still want to do! Definitely get a referral via the GP to physio and podiatry; with a bit of luck, they'll liaise with each other to get you more mobile again. It might take time and determination, but they should get you somewhere close to where you want to be, without eroding your funds in the process!
Sara xx
hi sara thats interesting do you mean to say my doc should fix me up with the podiatrist
cos i was thinking just now of paying as my ligaments in my ankles both leg are real crap
just had a walk outside up and down the side of the house in low footware and its frightening how far you should push it.today my feet are semi cold so im on the computer then have a walk up and down the side of the house
the longer this goes on the worse it gets every day nockbacks.
they didnt seem conserned as the knee surgeon just because the knee said normal on mri
but that was 3 months ago now and i can tell their is something wrong with the left knee by a mile now under the knee cap
i thought well if someone can square me up a bit with insoles well its worth a try than being in the house al day.
but i know i bought some insoles off the net and they were awfull and didnt feel right custom orthose are about 200 quid i know thats a lot of money but what do you do plus about 60 quid for gate analysis.
how accurate are these is probably like you said touch and go.
They're usually reasonably accurate, dependent on what methods they're using and their qualifications, but yes; in most areas, the podiatry department and/or the orthotics/surgical appliances department at the hospital will be able to examine you and fit you up with devices free of charge, and you don't have to pay if they need reworking!
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