spinal issues and cfids question

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Jan 20, 2010.

  1. simonedb

    simonedb Member

    Hey, for those of you that seem to have both cfids/fm type thing as well as a spinal problem like an injury or degeneration, bone spur, discs, etc do you ever have trouble knowing which thing is primary when you are in a flare? The symptoms overlap and seem to tie into one another and so although sometimes its really obvious to me when its just neck stuff bugging me, other times like now I am less sure, also as I get older its harder to distinguish.

    This last weekend I irritated my neck after briefly nodding my head to some live music, I was in a pretty stable state before that, and now this week I have the neck pain but also these bad headaches that I get sometimes that can also be triggered by the wrong food or medication where its intense pressure and it gets worse when I lie down (which is hard cus like to lie down obviously) as well as gut upset and throat feels slightly sore, maybe glands swollen and for me also a slight temp at 98 (97+ normal).
    Its not unusual that I will have one completely down day in a week but this is turning into 2-3 already where I don't want to leave the house and feel weak and unwell, yet it doesn't seem like a classic cold as not the runny nose aspect which I rarely get anymore, I think because of the immune system upreg all the time.

    Do you think that irritating the spine, that already has a weak spot could flare a virus too or something with the immune system? I guess I am curious because in the past there was that theory by Dr.s Heffez and Rosner that fms was caused by chiari malformation and cervical stenois, but that didnt take hold widespread and its hard for me to understand how that ties into the probably diastolic dysfunction that Cheney thinks many of us have with a little hole in our hearts and also the mcs aspect etc So I am thinking it is just another issue on top of the cfs, a spinal one, that perhaps is worsened cus of the virus causing more likelihood of brain miscommunication and pain disorder becoming permanent, or maybe the virus is in the spinal fluid and when spine jarred it flares....I dunno, anyone else knowor have theories on how spine problems and cfs connected? It bugs me because I don't know whether to pursue spinal care primarily, which is very limited anyway for me or viral issues which is obviously limited too.
  2. simonedb

    simonedb Member


    Also answer the following questions. Prior to the onset of your fibromyalgia symptoms:

    Were you injured in a motor vehicle accident?
    Did you suffer from a sports injury?
    Did you hit your head, hurt your neck or injure yourself in any other way (exercise, fall, etc.)?
    Did you have surgery under anesthetic?
    Did you have dental work done under anesthetic?
    I can answer yes to 4/5 of those....
  3. simonedb

    simonedb Member

    ok if I just wait long enough I will remember all the answers to my own question,
    just remembered that cheney's theory is that the heart hole thing causes inflammation at times in the brain which could effect the atlas/neck area too and get dx with chiari or stenosis and surgery recs and that explains why the symptoms can come and go dramatically sometimes

    so I guess then in theory if cheney's theory about o2 and the heart is caused by a virus then perhaps treating virus could help spinal chiari problems

    so anyone else feel free to harp in yay or nay or something new related to this. for me its really important aspects that I have been wanting to distinguish forever, potential viral from potential structural issues.....
  4. vivian53

    vivian53 Member


    I certainly don't have any answers to all your questions, but I do have anecdotal information:

    I was diagnosed with Fibromyalgia in 1994. It hit me like a ton of bricks, and two years later I was bedridden with pain, exhaustion, and mental fogginess. Since then, little by little, each year, I had gotten better. By 2008 I was able to not only take care of my activities of daily living, but was able to do stuff like go to the gym, and do volunteer work. I still had pain and fatigue, but the were much lessened. Medication, along with exercise and diet helped a lot.

    Last year I injured my shoulder and started having severe pain, not only in my shoulder, but all along the left side of my body, especially the back of my head and neck. I had never had a problem with headaches in the past. My head started to feel pressured, and as if it were swollen. I couldn't even wear sunglasses because of the pain. My doctor said I was having neck problems and gave me several epidural injections there, to no avail.
    Then six months ago I developed a constant loud ringing in my left ear.

    Finally in December I was referred to a neurosurgeon who decided to do several MRI's of my neck, head, and shoulder. When I saw him last week he gave me the results; I had a bone spur in my shoulder and a Chiari Malformation of my brain. He explained that the lower part of my brain was dropped into my cervical spine. This, in turn, is blocking the flow of cerebral/spinal fluid and causing pressure on my CNS, hence all my symptoms.

    While waiting for the next test, a CINE MRI, that will help determine the extent of the blockage, I am researching all I can on my Chiari. The only 'fix' for it is surgery, and it seems extensive, with only about a 50% chance of alleviating any symptoms. It consists of cutting your head wide open and taking out some of your skull and sometimes, top cervical vertebrae, and then scoring or patching the dura (covering of your brain). They leave the parts of the skull off permanently, for decompression. I have read peoples post-surgery stories in the support group, and many are still in pain, and somewhat debilitated by the surgery itself.

    I am still not sure what to make of this new diagnosis. I wanted to find out the reason for all of my symptoms, but not this kind of reason. It seems to me that it is just one more diagnosis of something that is not well known or studied, is controversial concerning it's causes and treatment, and difficult, if not impossible to treat. There is a study underway by the NIH on a less invasive procedure, but it's brain surgery never the less.

    I don't know how the virus works in to all this and don't even know if I want to go there right now. I do want to hear from anyone who has had similar experiences/diagnosis, especially from anyone who has been sucessfully treated for a Chiari Malformation.

  5. simonedb

    simonedb Member

    I have been diagnosed with cervical stenosis and possibly borderline chiari, in 99/2000, but surgeons had differing opinions and I was too scared of surgery to do that rad stuff, I can tell you more later but it was big in the news back then, google those docs I mentioned.

    I like the idea of a virus being involved, cus I would rather try to treat a virus then get brain surgery, right? and my symptoms do wax and wane but its quite a nuisance sometimes, like today, hit my head last night , accident around house and today all weak and fuzzy and pain, dont know if it will last a day or 6 months.
  6. vivian53

    vivian53 Member

    I am with you on the virus being the causative factor for our ills. I think that would be much better than brain surgery also. I had the blood test for the mycoplasma about 15 years ago and it was positive. I took antibiotics for over a year (not following the protocol exactly) and don't know if that is what helped me feel better or not. I did get better.

    On thing that concerns me about the Chiari dx is that I have had an MRI in the past and no one mentioned a malformation. I read that having any punctures in your spinal column can cause a leaking of fluid and eventually can result in a Chiari type problem. I have had at least seven epidural steroid injections in recent years and epidural blocks when I had my two kids. This may be an easier problem to fix but I am not sure.

    Did you have any tests to measure the amount of fluid that is being blocked? A nerve mapping test? I did Google the docs you mentioned and went to the Chiari Center website. One of the abstracts was about a study of people who had the surgery compared with those who used less invasive interventions; according to this study there was great improvement in widespread body pain and fatigue.

    What is your take on that? Sorry about your hurt head. Evidentialy this causes imbalance and clumsiness problems, which I have too. I am always taking a little "two step" when I stand, like someone who has had too much to drink. I have always just blown off this type of symptom, I thought it was just me. I also found out last week that not everyone has pounding in their head when they hold their breath or lean down for a few mins. I had thought that this was normal. do you have this type of problem too?

    I know I am full of questions (among other things lol) but I appreciate any info you might have.
  7. simonedb

    simonedb Member

    hey vivian, sometimes i have those issues you mention

    Dr Cheney's thoughts on chiari and stenosis and cfs is that the virus is primary and that it causes an inflammation, and in my case, when I had a surgery (cholecsystectomy-sp) that it caused swelling cus of the anesthesia and too much oxygen he thinks is bad in cfs, as he thinks we are in a hyper not hypo oxygen state as part of the problem, so symptoms can wax and wane because when more swelling= more pain in head and spine, and when it clears up a bit the symptoms with that stuff subside some too. It could explain why some people who get the surgeries do worse because the virus isnt also treated so although surgery might help on one level but then you also are now also dealing with the exposure to anesthesia which is hard on cfs as well as the trauma of surgery and a lot of us are extra sensitive.

    I have no idea for sure which if either thing is really the primary cause of my problems at this point. I would do surgery if I started to lose use of an arm or couldnt walk cus of the spinal problems.
    Its such a crap shoot, I wish I knew what was best move, afraid to do anything cus some interventions have made things worse over the years.
    [This Message was Edited on 02/05/2010]
  8. vivian53

    vivian53 Member

    Having this Chiari diagnosis scares me much more that the cfs/fibro one. In fact the latter has never scared me, caused me to feel angry and sad yes, but not afraid. Not just from what can happen as far as CNS damage and stuff, but from the surgery too. I have read many people have infections post surgery. I can only imagine, between the infections that live in hospital and our lowered immune systems.

    Yeah guess I am going to have to wait it out and see what develops with further diagnostic testing and for the research people to come up with a much less invasive technique. Making the wrong move by getting brain surgery is a biggie on my list of not to do's.

    When I first got my diagnosis and hadn't done any research I asked my doctor if he 'fixed it' with a shunt and he replied "On no, it's much more extensive than that!" I knew then I was in deep trouble.
  9. simonedb

    simonedb Member

    there used to be good info on net on how to conservative care for chiari, wear tennies no jumping lifting etc you have to live a real careful life
    i am hoping that by trying to treat cfs that will help with inflammation and help minimize stenosis or chiari
    ie I got exposed to chems in my home this week with some remodel stuff a guy doing and also bumped my head and i could feel the swelling in my neck
    seems like i need to go live in a totally bland safe environment
    but maybe if xmrv related and there is an antiretorviral cocktail that would help