botulism toxin Botox

Discussion in 'Fibromyalgia Main Forum' started by Psyche, Jun 14, 2006.

  1. Psyche

    Psyche New Member

    Hi everybody ! I have FMS and yesterday I visited a Pain Specialist, who recommended a session of botulism toxin injections, commonly known as Botox and used for smoothing wrinkles on the face.
    The injections are given on the painful trigger points found during the session. They may be as few as 5 or as many as 15... Apparently, the pain gradually diminishes over a period of 3-4 days and stays away for a few months, depending on the individual. Then it returns, but, hopefully, less sharply.
    Then another session of Botox is undergone.
    My question is: does anybody know about this, is it recommendable, and where does it all end? Can one have Botox injections indefinitely?
    And so on.... I'm at a loss, please let me know whether any of you have tried this treatment, OK?
    Hugs, Psyche
  2. Yucca13

    Yucca13 Member

    Hi Psyche,
    I had Botox injections (given by my physiatrist) three weeks ago (just noticed your post).

    I had them in my forehead for migraines and pain in the back of the neck. I believe that I had a reaction two days later as I was very ill with vomitting for about 24 hours.

    I'm not positive (as headache cycles come and go for me) but I think they have helped the headaches somewhat.

    I've decided that I cannot tolerate any other injections in the back of my neck of any kind because they cause the pain to be more intense and increase tenderness there. The doctor was hoping it would help the trigger point areas but, for me, they didn't help.

    Best of luck with Botox.
    Val
  3. Psyche

    Psyche New Member

    Dear Val,
    Thank you SO much for replying to my inquiry. I do hope that your migraines improve, at least. I've heard that Botox is being used for all sorts of pain. But it's not yet approved by the FDA for Fibromyalgia. I don't live in the U.S., anything goes in my country, Argentina...
    I believe my Pain Specialist wants to use me as a guinea pig. There definitely haven't been enough clinical trials with Botox. I have decided, after asking around (here in this forum as well as with other doctors), to hang on a bit.
    Even trigger points are being debated. My rheumatologist says that most people hurt if you press certain trigger points (they're similar to the accupunturist's points), so she's not really interested in them. She recommends swimming, Tai Chi Chuan, some Yoga positions, fixed bicycle and stretching... One's life seems to fly away with so many exercises to be done !!
    And I've now heard that Botox can accumulate in those points and cause more pain, which seems to have been your case. I'm so sorry about that, and about the nausea & vomiting. What an experience ! But it will be well worth your while if the headaches go away, so I'll be praying for you, Val.
    I'm especially afraid of this treatment, because the Botox stays around for about 3 months, and what if I hurt more all that time? Apparently, it paralyses one's muscles, some people even need rehabilitation if the dosage has been too high...
    Anyway, if anybody else has undergone this Botox thing, I'd love to have more feedback. I'm such a scary puss...
    Cheers, Sylvia

  4. CAAnnieB

    CAAnnieB New Member

    Psyche,

    I was given Botox injections in the hospital for pain relief in my worse areas of muscle spasm...neck, shoulders, upper back. (in 2003) At that time; I believed that the pain relief & increase in function from the Botox was dramatic, but I was also switching meds at the same time, so exactly how much benefit came from the Botox I'm not sure.

    After fighting with my insurance company for a year, I finally received approval to receive the Botox injections as an outpatient. I tried 2 series of injections. These last 2 times; I flared from the injections & had PERHAPS a minimal amount of VERY temporary improvement(days)...Then I returned to my pre-injection level of spasm very quickly. I decided at that point not to continue to receive the Botox injections further.

    After my hospital injections; I had such high hopes for good relief from the Botox. Unfortunately,for me; it didn't continue with the subsequent injections.

    I am now doing a treatment program targetted at wiping out chronic Chlamydia Pneumoniae & Mycoplasma infections. It seems to me that if the underlying causes of Fibro/ CFS are not addressed; any other "treatment" is simply a bandaid...Treating symptoms, but not really getting to the root of the problem. Of course, sometimes any relief from severe pain/ spasm is appreciated when we live with such chronic pain daily.

    I suppose the Botox injections are worth a trial, but for me the results were not significant.

    Hugs,
    Annie
  5. Psyche

    Psyche New Member

    Hi Annie !
    Thank you very much indeed for your reply. I've been having serious doubts about letting this Pain Specialist use Botox on me for FMS. I consulted a reliable clinician and she says to wait, it's still all very experimental. She's even heard of cases where the Botox concentrates in one spot at a high level and leaves the muscle paralyzed far too much.
    Then you need rehab, as if you'd had an accident... :-(
    This,BTW, also happens when Botox is applied inadequately on the face, for wrinkles ! You can end up all bumpy !!!
    I totally agree with you that they have to find the reasons for FMS, the origin, etc., otherwise it's all patches. I don't mind patches if they're safe, but that's apparently not the case with Botox....I do take Tramadol when the pain is very bad...but try to avoid it. At least the body eliminates it in a few hours. Botox stays there for several months !!!! Wow.... :-(
    I'm sorry about your other troubles, I do hope they solve them quickly. Good luck on that score !
    My FMS was also complicated with Helicobacter.Pylori in my stomach, chronic gastritis and reflux from hiatial hernia !!!
    Life is beautiful !!!!
    But I struggle on, get quite a lot done, in spite of....
    How're you coping? Do you swim, do Tai Chi, or bicycle?
    It's been VERY useful hearing from you, THANK YOU.
    HUGS, Sylvia ***

  6. TwinMa

    TwinMa New Member

    I had Botox injections twice in my forehead for headaches. It didn't do anything to help my headaches. This was several years ago.

    About a month after the forehead injections, I had Botox injections into my neck for both neck pain and headaches. It made my neck MUCH MUCH worse. My neck was in constant pain for a month. It was terrible!

    All the injections also hurt as they pierced my skin and as they were going in, even though they used a topical anesthetic.

    So for me, Botox was a definite mistake. I will never even consider them again.

    Massage has been a much better option for me. It doesn't take away all the pain, but it is one piece that helps.

    Good luck!
  7. Psyche

    Psyche New Member

    Hi TwinMa !
    What a relief to get several replies to my inquiry. I was SO undecided. The idea of NO PAIN FOR THREE MONTHS was very enticing. Fortunately, I've consulted all over the place, and you people have been MOST helpful... NO, I shall definitely not let them get that needle near me, no sir !

    It's strange, but I've seen a lot about Botox on Internet, and apparently it's being used a lot in Spain, Mexico and now in Argentina.... BUT I WANT TO KNOW AT LEAST 20 PEOPLE WHO'VE HAD SUCCESS WITH THEM FIRST, THEN I MIGHT CONSIDER IT. SO FAR, NO POSITIVE REPLIES !!!

    Yes, I have massage, I do fixed bicycling (very helpful), as well as Tai Chi, also very relaxing, before bedtime...

    In spite of being ALWAYS told that FMS doesn't go away, I'm a stubborn person and still think that one day it'll abandon my body, perhaps for no reason.... I have some days with NO PAIN, it's glorious !

    Hugs to you TwinMa, and a GREAT BIG THANK YOU !!! Hang on there, we'll beat this thing yet,
    Sylvia ***
  8. julieisfree05

    julieisfree05 New Member

    I have talked to people who've gotten relief from Botox injections, but for the long term there can be negatives!

    Repeated injections can cause permanent nerve damage, which can lead to strange "facial expressions" if you are getting them in the facial area.

    I have no personal experience, but this is what I've heard from friends and doctors.

    - julie (is free!)

    Freedom's just another word for
    nothin' left to lose..

    - Kris Kristofferson
  9. mominpain58

    mominpain58 New Member

    I had botox injections to my neck and shoulders, it was one of the most painful procedures i have ever had and i swore i would never do it again. and...besides that it did NOTHING to help me. The dr was putting the needles into muscles that were so hard from spasming they were like rocks. I almost passed out when he did it, and still a year later swear i will NEVER EVER do it again.
  10. place

    place New Member

    A doc there was doing a study for Fibro's, they had to quit the study because to many people were getting sick. I think it was that they had too many injection points which were too much (that what my doc said, who is also a prof at OSU).

    I also have kids at my school who get botox injections for their CP spacitity. It works like a dream. They typically get them in there calfs at the base of the nerve. It helps them to walk!
  11. Psyche

    Psyche New Member

    Hi Momim !
    All the info I'm getting is negative for FMS. I was suspicious of the treatment and you kind people have helped me to decide NO NO NO.... it's still too experimental.
    I'm sorry about your suffering and the disappointment. One dreams of a painless life, right?
    I think there are a lot of quacks, even inside the medical profession. That's why patient intercommunication, like in this forum, is a safeguard.
    Hang on there, we'll beat this one day!
    Hugs and many thanks, Sylvia ***
  12. Psyche

    Psyche New Member

    Hi Julie the free one!
    Thanks so much for your reply. I've had such a lot of negative feedback, that I've certainly decided to wait.
    Even so, I'm going to find out what my Pain Doctor proposes to charge me, just out of curiosity.
    My opinion is that, since the treatment is in its early stages, they should pay US instead !
    I certainly ask myself what long-term harm can come from Botox, since nobody knows that yet. A dangerous venture, indeed.
    Thank you and many hugs,
    plus lots of freedom!!! Sylvia ***
  13. Psyche

    Psyche New Member

    Hi place !
    Yes, I read about the Ohio State trials. It's reported Online in the Mayo Clinic website. They had to stop the experiment....
    Nonetheless, as you point out, Botox seems to be very helpful for spasticity. I'm glad about that. Perhaps with Fibro they need to regulate the quantity/dose of injections. I asked my Doc whether he could give me only a few shots, say about 3, and he shook his head. I hate the idea of about 15 jabs, it's kind of terrifying, right?
    Still, another person in this forum had only 3 jabs and the trigger points got a lot worse, so let's forget about Botox for now, shall we?
    Lots of luck to you, I'm so grateful for your response,
    hugs, Sylvia ***