Tmj and fibro

If you look up all the symptoms of having a TMJ problem it all sounds like fibro symptoms,my chiropractor was the one that told me I had TMJ problems,so since then I have been getting that looked at and it's amazing how it all ties into each other,it makes total sense as the tmj is all about muscles!!!Ive had fibro for over 30 years and have tried everything that I could possibly do, to try and live a normal life,soi'm really hoping that the Botox I'm getting in my jaw muscles will finally bring me some relief to this terrible disease!!

14 Replies

  • My TMJ disorder was diagnosed at the same time as fibro. The pain can be excruciating as you know and last for several weeks. A lot of fibro people suffer with it and it does seem to go hand in hand.

    The Maxillofacial specialist suggested Botox but I got a bit squeamish and refused. Please do post about how you get on with having it done.

    The alternative is to have a special dental plate that goes over your back teeth at night to stop grinding, no good to me as I have no bottom back teeth!

    Does your chiropractor manipulate your jaw? When I suggested this as a solution the specialist put his hands up in horror. Each to his own I suppose.

    Please keep in touch.

  • I was really scared to try Botox, but I was hoping that I could get some relief from it as there's nothing left to do. The first time I got the Botox they thought it was for tension headaches so they did protocol across the forhead back in the the neck and on the sides of the head, he only used 100 units and apparently it was not enough because it didn't work, but I heard that dentists were good at treating TMJ so that's where I went to for my next Botox.he also wanted me to get the splint but after reading up on it I didn't really think it would help me also thought it might make me worse.He used 25 units in each side which is also protocol but of course they're not knowing how much it will actually take so I am going back to get was very easy to take the needles, they barely hurt at all, I did have headaches and a bit like the flu for a couple days but other than that I had no other side effects. The chiropractor never manipulated my jaw he used a handheld device called an activator, he would just put it up to my jaw and give it a snap, he said my jaw kept slipping out which is true I did know that from before. It did help a little bit on the headaches they weren't so severe for a couple of weeks but then I'd have to go back in again

  • Hi Duke1

    Welcome to the forum and it is wonderful to make your acquaintance. I want to genuinely wish you all the best of luck with your botox my friend and please take care of yourself.

    All my hopes and dreams for you


  • Hey all hope you're all okay. This may sound stupid. Will someone please tell me what tmj is thank you

  • Hi Jackjac1 , It's Temporomandibular Joint Disorder, it causes really bad pain in the joint just in front of the ear and can spread up to the head and down into the jaw, well that's how mine is!! My rheumatologist described it as arthritis of the TM joint which makes sense as I have polyarthralgia. It is also linked to Fibro as Duke1 said, mine has also caused tinnitus in the ear on the same side, coincidence maybe but it's only happened since the TMJ started. It's not there all the time, it seems to flare a bit like the Fibro. Hugs Linda x

  • Hey willow thanks for info I've learnt so much in this forum take care Jude xx

  • You're welcome, Jackjac1 . I've had brilliant advice from this forum, I find the best people to ask about anything like Fibro are fellow sufferers, even just reading through the comments I have learned bits that are so useful. Hugs Linda x

  • My dentist has given me excercises to do but I really can't see how they will help my jaw from coming out but they know best so giving it a shot

  • I know the difference having Botox makes to me because when I don't have it, the pain can be totally, tear inducingly, excruciating. The last time the pain was really bad & the meds hadn't kicked in I took my BP as I'd read that acute pain puts it up. When the pain was at it's height my BP was 188/97, when the painkillers & muscle relaxants eventually kicked in it went down to 132/74!

    It was the oral max consultant that I went to see about my TMJ who told me he thought I had all the symptoms of Fibro & to go back and see my GP and ask him to refer me to Rheumatology. I did say to O/M Doc that I'd been trying to persuade my GP of that for a long time so he said that he would put something in his letter. GP said it was "a diagnosis of elimination" so I told him that I would like it to be eliminated. Eventually got referral to Rheumatology & she confirmed the Fibro - although she now won't see me as she says there is nothing else she can do.

    I'm supposed to have Botox every 3-4 months but there's been a problem since the only person who was doing them in the East of Scotland (may even be all of Scotland) at Edinburgh Western General took early retirement this time last year. I have had two since by his replacement but she hit the wrong place the first time ("I don't normally do this type of procedure, what needle did Dr M use?"), second time she got it right but not sure if I was given enough because it didn't last long either (see first paragraph). Now that Doc is on maternity leave & it's now long overdue as there is no-one to replace her & I've now had painkillers increased & two lots of muscle relaxants/antispasmodics added to my meds list.

  • So sorry that you are having such a terrible time with all of this, have you tried the dentist to see if they will give you the Botox for your TMJ. There's also a lot of spas that now have doctors in there doing Botox for them, you might have to travel a bit to find somebody that will do the Botox for you,good luck!!!

  • Thanks.

    I think the Docs at spas will be cosmetic surgery types dealing with frown lines & wrinkles - mind you I have a few of those too!!!

    When I was originally told about it by Oral Max consultant they said they couldn't do it & I had to have it done by a neurologist at a specialist clinic - if they don't get it right it can cause a lot of other problems. It may well be the case that's just my Local Health Authority policy.

    To have it done privately, as far as I can tell, costs around £225/250 every 3/4 months & I don't have that sort of spare cash.

  • It's terrible to be in a position where the only thing that helps with our pain and our medical won't cover it, it sure does eat up the savings no doubt about that. Take care

  • I have tmj. At night I grind my teeth at night, I have never heard botox for this though. Good idea, thanks!

  • Oh my gosh I never realized that pain around my ear and jaw going down was linked, and as I think about it, its like a lightbulb coming on!!! Thank you, I have suffered a lot and did not connect the!!!

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