Having a Horrible Day! Please Help!

Discussion in 'Fibromyalgia Main Forum' started by dhcpolwnk, Nov 9, 2002.

  1. dhcpolwnk

    dhcpolwnk New Member

    I'm having a really awful day today, and I'm not sure how much is fibromyalgia (or CMP, if I have it) and how much is a reaction to my second shot of Avonex, which I take for my MS. The most common side effects of Avonex are flu-like symptoms and body aches.

    I woke up yesterday in the wee hours with pain in my jaw, teeth and ear on the right side. I was wearing the NTI device I wear for TMJ dysfunction (which I also have), and this pain seemed different from TMJ pain I've had in the past. I called my dentist, and he said it sounded muscular. He made a couple of symptomatic suggestions and said to come in on Monday if the pain continues. (My dentist is a long-time friend, so I don't think he was just trying to get rid of me.

    Anyway, I had my Avonex shot in my right thigh about 6:30 p.m. last night, taking some painkillers to deal with the side effects. But the painkillers didn't help much, and by 10 p.m., I had extensive pain. I took a Fioricet and 200mg of Neurontin when I went to bed, and that helped for a while, but I felt very woozy--I think from the butalbital in the Firicet. Despite all the meds, I had trouble sleeping and woke up still hurting. I could barely eat anything this morning and start feeling queasy, too. At least that eased after I went back to bed, and I was able to take a bit of a nap, which helped, I think. I took Fioricet again--which has never bothered me in the past--and once again I felt woozy, a bit dizzy, and sometimes as if my eyeballs were moving around without my wanting them to! (I think that might be nystagmus, a fairly common MS symptom, but one I haven't experienced in the past.)

    All of this is so confusing. I know the important thing is just to find something that works, but it's hard to know what to try when you can't figure out what's causing the pain.

    The reason I'm posting this is to ask:

    (1) Could this be a fibrmyalgia flare? (I'm new to fibromyalgia and don't know what a flare looks or feels like.)

    (2) Does anybody else have jaw pain with intermittent piercing pains that feel like something inside the ear itself?

    (3) Does anybody else get pain aroung the top of the shoulder, radiating down the arm? It kind of feels as if I had a shot in the arm, but my shots have been in my thighs. My right arm is so sore I feel as if I want to put it in a sling to limit the movement.

    I don't know whether this is fibro or not, but this is about the worst pain day I can remember.

    --Laura R.M.




  2. dhcpolwnk

    dhcpolwnk New Member

    I'm having a really awful day today, and I'm not sure how much is fibromyalgia (or CMP, if I have it) and how much is a reaction to my second shot of Avonex, which I take for my MS. The most common side effects of Avonex are flu-like symptoms and body aches.

    I woke up yesterday in the wee hours with pain in my jaw, teeth and ear on the right side. I was wearing the NTI device I wear for TMJ dysfunction (which I also have), and this pain seemed different from TMJ pain I've had in the past. I called my dentist, and he said it sounded muscular. He made a couple of symptomatic suggestions and said to come in on Monday if the pain continues. (My dentist is a long-time friend, so I don't think he was just trying to get rid of me.

    Anyway, I had my Avonex shot in my right thigh about 6:30 p.m. last night, taking some painkillers to deal with the side effects. But the painkillers didn't help much, and by 10 p.m., I had extensive pain. I took a Fioricet and 200mg of Neurontin when I went to bed, and that helped for a while, but I felt very woozy--I think from the butalbital in the Firicet. Despite all the meds, I had trouble sleeping and woke up still hurting. I could barely eat anything this morning and start feeling queasy, too. At least that eased after I went back to bed, and I was able to take a bit of a nap, which helped, I think. I took Fioricet again--which has never bothered me in the past--and once again I felt woozy, a bit dizzy, and sometimes as if my eyeballs were moving around without my wanting them to! (I think that might be nystagmus, a fairly common MS symptom, but one I haven't experienced in the past.)

    All of this is so confusing. I know the important thing is just to find something that works, but it's hard to know what to try when you can't figure out what's causing the pain.

    The reason I'm posting this is to ask:

    (1) Could this be a fibrmyalgia flare? (I'm new to fibromyalgia and don't know what a flare looks or feels like.)

    (2) Does anybody else have jaw pain with intermittent piercing pains that feel like something inside the ear itself?

    (3) Does anybody else get pain aroung the top of the shoulder, radiating down the arm? It kind of feels as if I had a shot in the arm, but my shots have been in my thighs. My right arm is so sore I feel as if I want to put it in a sling to limit the movement.

    I don't know whether this is fibro or not, but this is about the worst pain day I can remember.

    --Laura R.M.




  3. teach6

    teach6 New Member

    I have had some of the same pain problems as you described with my FM, when It was worse than it is now. I had bad TMJ before I started taking Klonopin. Sometimes my ears were plugged up from the muscle tension in the area.

    I also have had pain from my shoulders going down my arm. So this could be a FM flare. I think I'd check with your doc on Monday to be sure. Hope you sleep better tonight.

    Barbara
  4. dhcpolwnk

    dhcpolwnk New Member

    Thanks for responding. Makes me feel as if I'm not alone, feeling sorry for myself--or going nuts!

    Regarding the Klonipin, do you take it during the day or just at bedtime? What strength? I took it about 10 years ago for my MS-related myoclonus, but it completely knocked me out at 1 mg. I don't know whether I could tolerate it during the day.

    --Laura R.M.
  5. poodlegirl

    poodlegirl New Member

    I actually don't even call them flares anymore, its more like a rage! I am in a constant state of feeling like I am coming down with the flu. I get the shoulder/arm pain thing too. I am finding new aches and pains daily.
  6. karen2002

    karen2002 New Member

    Sorry to hear you are having a rough time. I do not have TMJ problems, although two of my four children do. I do have the pain you describe in my shoulder, radiating down my arm. This invariably in on my right side, and I think it originates in my cervical spine. It is deep pain, almost an electrical burning, is the best I can describe it.
    I haven't had fibro long, either. I amazed at all the various symptoms it produces.
    I have just started on klonopin. I take .05mg. at bedtime, to begin with. I had asked Mikie about klonopin--she had some great info on using 1/4 of the .05 tabs, if one is too affected by it, if I remember correctly. Perhaps you should ask her, as I am foggy sometimes. Seems a sensitivity to meds is a common symptom, for alot of fibro people. I am just the opposite, and require horse size doses.
    Best wishes---hope you feel better, soon.
    Karen
  7. paula45

    paula45 New Member

    I have the terrible pain in the jaw and ears. It's the worst pain that I personally deal with. None of my pain meds touch it and I pound my head and cry with it. For me, it starts as an ache in my neck, then gets progressively worse (pretty quickly) until I feel like I have screwdrivers sticking in my jaw, ear, behind the eye, etc. I know for me, it's part of the fibro. I sympathize and I'm so sorry you're having this.

    Soft hugs
    Paula
  8. achy

    achy New Member

    I am having new ear problems too. I used to get this fullness feeling..like they were full of water. The Doc put me on eardrops and that went away but I do get the stabbing paind deep inside the ear like when I bend or move a certain way. I have an appt with an ENT next week.
    I think its muscular, but better to get these things checked out.
    Do you have IBS? The queasyness could be that...or just your body not liking the combo of meds.
    I have had the shoulder pain too.
    It's really hard to say what is happening...It could be a flare...it could be the wether. Is it damp? is a front coming thru? These get to me.
    Give the doc a call Monday & be sure to get your ears checked out. Don't risk loosing your hearing...it could be nuttin hunny...it could be summthin. LOL
    Warm Fuzzies & hope you feeling better
    Achy
  9. pam_d

    pam_d New Member

    The arm/shoulder thing sounds so familiar! I've been having a right arm/shoulder severe pain thing for about a month. I think exactly what you said--it's like you want to put your arm in a sling to limit movement. Holding a mug is near impossible, and even turning pages in a magazine is hard. I'm thinking good thoughts for you, you are going thru so much with both MS & FM--and trying to treat both of them! Hope you get through this latest tough patch, let us know how you're doing...

    Gentle Hugs,
    Pam
  10. marcus1243

    marcus1243 New Member

    That's a heck of a combination you're up against -- I admire your strength in taking it on and battling away! The arm/shoulder pain sounds very much like an FMS flare, and I think the problem is that FMS flares can very easily be provoked by medications (especially those like Avonex, which cause muscle pain). I think the key is in your own post though - you say that you felt better after sleeping. I think you may have to fix yourself up with a heavy sedative on the day of the shot and simply take that day out to recover, sleeping if necessary. I know a couple of people with MS, and Avonex day is generally a no-no for doing anything for them. The Avonex side effects should only last a day, but the FMS flare can last weeks, so you need to stop your body overreacting to the shot.
    As far as the ear pain/jaw pain, if the pain is lightning-like in intensity, it could be trigeminal neuralgia, which again is treatable. But I've also had ear pain and jaw pain with FMS, so it could be both/either. It sounds more like a TMJ-type pain to me, provoked by the shot again.
    Please see your PCP/neuro and sort out an efficient sedative for the day of your shot so you don't have to go through this again!
    Best wishes and hang in there,
    Marcus
  11. dhcpolwnk

    dhcpolwnk New Member

    Ever since I was diagnosed with fibromyalgia and worked things out so that I could start on Avonex, I have been trying to get some guidance regarding possible interactions/effects of one on the other. None of my doctors seem to have a clue, nor did they seem particularly interested in researching it. My neuro's office told me, "Oh, we don't deal with fibromyalgia." My primary care doctor, who is a very nice guy and willing to give me whatever referrals I need, really doesn't know a heckuva lot about either fibro or MS. The psychopharmacologist I'm seeing to deal with possible problems with drugs needed for the two conditions understands about the brain and pain, but he's not an expert on fibro, and I doubt that he has any idea about the side effects of Avonex on people with fibro.

    I have posted messages to an online MS support group asking for responses from people who have both MS and fibro and who may be taking Avonex, but I got only a couple of responses, which basically said that the same thing about side effects that I heard from those who *don't* have fibro.

    Yours is the first response I've gotten that gets to the heart of what I've been asking about.

    Again, Marcus, thank you so much!

    --Laura R.M.

    [This Message was Edited on 11/11/2002]