Blood Disorders linked to CFS/FM?

Discussion in 'Fibromyalgia Main Forum' started by Karamelz, Feb 1, 2007.

  1. Karamelz

    Karamelz New Member

    Hi! While I'm new to this site, my experience with CFS/FM is not. I suffered with the diagnosis of both (and their many disabling symptoms) for 8 years. I have now been "well" for the past 2.5 years. What led up to my wellness was finding a site (can't remember where) studying a possible correlation between blood coagulation problems with CFS/FM. They had done a clincal study, in which a lady with CFS/FM starting taking injections of Lovenox (first on a weekly basis, then on a daily basis). The lady started seeing positive results almost instantly. After 8 weeks of daily injections, she felt better than she had in year's. I had coagulation problems before being diagnosed with CFS/FM, but was taken off anticoagulants (Warfarin) year's earlier. It took me finding that site, and my doctor's 8 year's to consider the possibility that they may be related. I also developed another life threatening pulmonary embolism-which is how I got to try Lovenox for myself. I was almost excited to be able to try the Lovenox. Knowing it would only be for 10 days though, I feared nothing would be accomplished (as far as maybe "curing" my CFS/FM symptoms). But, surprisingly, within 4 months of being on Coumadin (the generic Warfarin didn't work for me), I felt better than I had in 8 years. Within a year, I was back to working again.

    I'm not saying this is the answer to everyone's illness. But, it should be considered. I'm also wondering if any more studies have been done on this possible link? I'll be on anti-coagulants the rest of my life now (am 38). It's not a good medicine, but I look at it as a life-saver. Suffering like I was, all those year's, was not living. Although I do consider myself "well", I still pace myself and allow for sleep. I still sleep at least 14 hours a day (more on my days off), but am able to accomplish alot during my other 10 hours. It's not the life I envisioned 20 years ago, but again, at least it is a life. My doctor's still don't know why my blood clots-it just does (and I've had every test there is).

    Regardless of what has helped me, I encourage all those suffering to NOT give up. Something unexpected might pop up, and medicine will figure this out.

    :) Karamelz
  2. elliespad

    elliespad Member

    Great to hear you continue to do well. Interestingly, about a year ago, I did one month of Heparin Injections for the same problem, Hypercoagulation of blood. (It is believed to be caused by chronic Viral Infections).

    Anyway, almost immediately, ALL the muscle and tendon pain I had, vanished, gone, completely! Joint pain was still an issue, but muscle and tendon pain completely vanished. After the one month, the doctor switched me over to Lumbrokinase, which are enzymes, and the muscle and tendon pain gradually returned.

    This is definately something many people should investigate.
  3. PVLady

    PVLady New Member

    I would not be surprised if I had hypercoagulation. My dad had it and was on Coumadin. They said he had thick blood.

    One thing I remember, Coumadin was very hard on him. He had several episodes of internal bleeding while on it. He had was tested regularly to make sure his blood was not "too" thin.

    Are you on a very high dose? I would be willing to experiment but I don't want to trade one problem for another.

    Thanks for posting this.
  4. Karamelz

    Karamelz New Member

    Hi Again! :) With my illness I suffered from the chronic fatigue (sometimes 24 hrs sleep wasn't enough). I also got sick alot-caught things without even being exposed to them. I also suffered from the chronic pain-pain so bad I couldn't sleep, despite being desparately sleepy. I had been taking massive doses of antivirals (Valtrex) and anti-yeast (Diflucan), both of which being experimental in nature (neither relieved the symptoms). I took Provigil to keep me awake-which even at large/frequent doses, only allowed me 1-2 hours of awake time. I took Ambien at night, only when my pain symptoms were high. In the long run, I think those uppers & downers just worsened my brain fog (didn't know if I was coming or going...or where-lol). It still amazes me me that anticoagulants have solved most of that suffering. That's all I take now, except for a mega multivitamin.

    I do think it's worth invesitigating, as being a possible underlying factor in this "mystery" illness. But, I would strongly discourage anyone from testing it on themselves without a medical followup. I take a very high dose of Coumadin (anticoagulants)-15mg five days a week, and 12.5 mg. two times a week. When my test results are where they should be, I get retested every 4 weeks. When my blood is either too thick or too thin, then I get retested every week. As one of responder's noted regarding her grandfather's internal bleeding problems, patients taking this medicine need to be closely monitored. I can test fine one day, and the next, possibly suffer from a bleeding episode that can be life threatening if not taken care of right away. I have to watch what I eat very closely. Foods (including vitamins/herbs) high in Vit. K, cause the blood to clot (thicken). You'd be surprised just how much Vit. K is in ordinary foods (even oatmeal). It sucks wanting to diet/eat healthy, but not being able to eat that healthy stuff. Ordinarily, a person could still eat those things (basically all vegetables, oatmeal, plus a hundred more things), if consumed on a consistent basis. But, with the high dose needed to regulate my blood, any of those things I do eat, basically works against me (like not taking any medicine in the first place). That said, maybe if someone would want to test themselves, maybe limit your intake of Vit. K first. I never tried it before now, but maybe it would help. I don't know. The site is being updated right now, but you can find a great list of foods containing Vit. K at (somewhere on the site). Aspirin is a blood thinner, and while I did try taking it daily before going on Coumadin (before they discovered my new clots), it's hard on the stomach...guess we all know the negative aspects of taking aspirin. Alcohol is a blood thinner too-but again that's not an answer either. If you take Diflucan, it is a massive blood thinner. I took one a couple months ago, and it really threw off my blood levels. In retrospect, if it had that great of effect on my blood, I'm surprised it wasn't enough to ward off the blood clots I must've been developing while taking it daily (year's ago). Maybe my body just needs that daily dose of "rat poison" (coumadin). LOL

    Sorry to babble (comes naturally). I'd be interested to see more research in this area as a link to CFS/FM (whatever we call it). If you & your doctor have tried everything without seeing any imrpovement, then I'd mention this to a possibility. I can try harder to find the original site where I saw the study at (that helped the lady), and you can maybe print it out for your doctor. Unfortunately, there's no easy way to know if you have a blood clotting problem. There are dozens of tests they can run on you. But, if you're like me, you won't test positive to any of them. There are some tests I do test out of range on (regarding the blood). My red blood cells are too big and there are too many of them. It's been a long time since I looked at my charts, or even thought about it-so forgive my lack of terms here. ;) So again, while I don't test positive for any clotting disorder, the fact that I've had 3 DVT's (Deep Vein Thrombosis) and 2 PE's (Pulmonary Embolisms-clots in lungs), tells my doctor's I do have a clotting disorder (they just don't know what it is). The only way they know if I have a clot, is to use the doppler scan on my legs or the radionuclear scan on my lungs. These aren't tests they'll run unless someone's having some type of medical crisis. When they found my last PE (finding 15 clots in my both my lungs-one of which was blocking a heart valve), I knew I was sick, but didn't think I was more sick than get accustomed to not feeling well when it goes on & on for year's. It just came about because I had a uterine cyst that was to be removed. It was during the pre-surgical exam that they found an abnormality on a chest xray. Scar tissue and pneumonia look the same as a clot on an xray. They were goinbg to dismiss it as scar tissue (from a previous PE). But, I spoke up, asking if maybe it had anything to do with my recent cold/cough. Thankfully my doctor considered it, and that's when they found what they did. Sometimes it's hard to know when we're "more "sick" than what we're use to. We have good days & bad. But, I guess we need to just keep at it, keep speaking up to our doctor's against our suffering, and just hope we find a doctor willing to explore all possibilities.

    Done babbling now-time for work. LOL :)
  5. roge

    roge Member

    yes, agree, best strategy is check for HC first and treat it if you have it before antivrials as antiviral will be more effective.

    Also read from a former poster here "sujay" who is a dr. and was quite the inspiration here said she believes a low ESR might be a good indicator of HC. Dr.s seem to only care about a high ESR as a marker for inflamation but there must be something to a very low number as I have wondered this myself as my ESR is always 0. ESR has something to do with how quick red blood cells flow so has to do with the flow of blood which could make sense as to why Sujay said if someone has an ESR< 2, good indication thhe person could have CG. Would be interesting to know all the ESR's of people with Fm & CFS vs. normals as I wouldnt be surprised if we were all in the 0-2 range. Believe the upper cut off is usualy your age divided by 2 so lets say 20 for a 40 year old.

    Believe the Hemic panel is $500. Another test to add my shopping list.

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