Could this point to fibro?

Had steroid injection wednesday as rheumy and i decided leflunomide not working so came off those.

Rheumy thought i could also have fibro (sorry cant spell or pronounce it lol).

Most symptoms had gone with steroid but today my jaw is aching. Had this last week on other side but thought it was ra.

Pain is right infront of my ear.

Any help greatly appreciated.

Thanks

Jo

Xxxxx

15 Replies

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  • Hi Josie

    How long had you been on the leflunomide?

    Have you stopped it in the aim to start something else?

    Not sure about fibro, but know I had similar symptoms before I started any of my drugs and now that I'm on them not had it again.

    Actually visited the dentist cos I thought it was toothache related.

    Dentist made me a night guard to year on my top teeth at bed time. Don't year it now but it helped a little till I started my RA treatment.

    I take methoject 20mg and leflunomide 20mg no more JAW pain but still pain elsewhere,, ankles, hands, hips, spine.

    Don't know if this helps.

    Get well soon

    Carole

  • Unfortunately fibromyalgia goes along side RA very well, when you have a flare it can be very difficult to tell which is which apart from the fact that you won't get any swelling with the Fibro as it will only be the RA that causes swelling.

    I hope things get better for you soon.

    Philip

  • Hmmmm, I know two people with fibro and both have visible swelling!

  • It must be something other than the Fibro because like I said you don't get swelling with it, a lot of people get wrongly diagnosed with Fibro , maybe they might want another opinion.

  • Well im off leflunomide and had steroid to tide me over till i get prescribed another ra drug. Id been on it just over 4 months.

    Theres definately no swelling just feels achey and out of alignment.

  • Was it the nurse or the consultant who said they thought you may have fibromyalgia?

    If it was the nurse, slap them! Do some reading to help yourself, as you know what you're experiencing. You can worry yourself to death wondering, but personally I prefer to seek out information and then quiz relevant clinitions. :o) symptomfind.com/diseases-co...

  • Put it this way.......according to the literature,

    Other symptoms that have been associated with fibromyalgia include:

    Reduced cognitive functions (memory and concentration issues)...... (I HAVE)

    Numbness and tingling in the hands and/or feet.

    Inability to be physically active....... (I HAVE)

    Migraine headaches.

    Palpitations....... (I HAVE)

    Irritable bowel syndrome....... (I HAVE)

    Therefore, just be careful you don't jump on any band wagons, or frighten yourself by 'others' tit bits of opinions......as stress is a major factor in ANY auto imune condition and you'll just make yourself really ill. Sometimes, research and then quizzing clinitions is the way to go........sometimes, accepting you've been dealt a shi@@ty hand is the best medicine of all. Balance it. x

  • A painful jaw just in front of the ear could be due to anxiety - grtting your teeth unknowingly - or to RA in the jaw joint - very common place to be affected.

    You can only do something about the first, but don't beat yourself up, it wouldn't be normal not to be anxious when there is so much to cope with. But deliberately relaxing the jaw and wiggling it frequently might go some way towards helping.

  • It was rheumy nurse who said i could possibly have it.

  • I feared so!!

  • As oldtimer suggested about it being due to anxiety, I strongly agree, my RA is very much under control (and my fybromyalgia) but I still have a clicky, crunchy, sore jaw. I am waiting for orthodontist to make me a mould to sleep with which will help, they do plan to x ray to make sure it's not RA damage but it is unlikely.

    In my opinion, if you feel better with steroid then it's unlikely you have fybromyalgia and as tamwill, if it was your nurse, which it was then slep them!! :)

  • My friend who had a problem with her jaw on and off was referred to a jaw specialist (max something?) and he told her that she was clenching and grinding her teeth because of the way her jaw was set. Her son had died suddenly and the stress had made her clenching much worse so that's why she had to flatten all food for several weeks. She rarely has problems with it now as she watches any kind of tension and makes sure she doesn't git her teeth ever as it knackers her jaw bone. However I think it's quite a common complaint with RA although I haven't experienced it. I don't think it's for rheumy nurses to make suggestions like this really - that's the job of your consultant. Tilda x

  • Dont ever grit my teeth or clench my jaw.

    Have terrible memory problems and lack of concentration but put this down to getting old.

    Have had palpitations for over a year and longer than the ra.

    Dont want to discuss my bowel problems but they have got worse over the last 6 months.

    Also have terrible pains in calves, inner elbows lower and upper back but never thought of this as i always put it down to ra.

    Only my joints have eased with steroids but above mentioned have either been there for a while or been more noticeable now ive been given a steroid.

  • Just want to say i really hope i dont have fibro as its hard enough coping with ra, still not under control and its 8 months since i started treatment!

    Thanks for all the info.

    Xxxc

  • I didn't realise I ground my teeth until my other half said that when I'm taking zopiclone to help sleep, I must go into such a deep sleep that I do do this apparently! So you may not be aware? My jaw visibly swells on occasion and I look really weird! (adjacent to my ears), and it also gives me headaches and jaw ache, I just put it down to RA. The treatment for Fibro, as far as I have witnessed, is Amitriptyline which belongs to a group of medicines called tricyclic antidepressant drugs. These medicines alter the levels of chemicals in the brain to relieve the symptoms of depression. They relax you enough to stop you tensing your muscles and tendons which in turn CAN help the pain. But, as Fibro is a new condition no one really knows how to treat it as yet. Two of my family members have it and two friends, they also have depression, but resisted taking anything for it. I believe, as a result of not wanting to take an anti depressant their Fibro symptoms got worse. It's a bit like the chicken and the egg scenario, which came first???? I don't know if yu take an anti depressant anyway? (i do) but if you do, it may be worth talking with yr consultant about swapping it over for another one that also is supposed to help Fibro (as Fibro has as yet, no clinical definitive test) and seeing if it helps with your symptoms. Although, it may knock you out until your body gets used to it.)

    I thought I may have Fibro a month ago due to my symptoms but have decided that until someone reputable in the relevant field suggests I could have it, to only deal with what they know I have.

    Small bites (emotionally) are always more easily digested. Try not to pile on your 'plate' with anything else at the moment, or you'll get over-faced and it will all become too much. I was the same as you when I was first diagnosed. I fluctuated between panic, wanting to research, frighted to research and trying to push it to the back of my mind. NOW I try to live as normally as possible, doing all the things I want to, slowing up when I need to and not feeling too guilty for not achieving all the things I wish I could do or feeling sad about all the things I can no longer do. It's all about balance. Get this right and I promise you'll cope better generally, holistically.

    Small steps.....small bites......small aims.....small goals......and be happy when you succeed, be mindful of where you 'fall down', and then do less of this next time.

    You'll get there, it just takes time.....

    xxx

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