Hypercoagulable State in Fibro & CFS
The Coagulation system, which is in our blood, is a reaction responsible for producing material which in normal non-pathologic states prevents excessive bleeding should a blood vessel be traumatized in any way. In patients with Chronic Fatigue Syndrome and/or Fibromyalgia, an excessive amount of a substance called soluble fibrin monomers (not blood clots!) are produced, which over time tends to form a coating along the inner walls of our blood vessels. This coating prevents oxygen, which normally travels from inside the blood vessel across the vessel wall to the muscles from occurring. Eventually this leads to chronic muscle oxygen deprivation which in turn leads to increased aches, pains, overall weakness, insomnia and brain fog.
In addition, the coating along the inner walls of the blood vessels also allows for chronic infections (that would otherwise be killed off by our immune system or antibiotics) to live and thrive within these “thickened” walls because these walls now provide a coat of armor to protect these infections from any harm, which is great for the infection but bad for the patient!
Routinely this can be checked by doing blood work; however, treatment of these thickened walls typically involves either natural oral therapies for a few months, or a trial of injectable heparin given twice daily. Heparin has provided fairly noticeable improvement in pain, often being able to stop taking strong narcotic pain medications for good. Treatment of this condition typically unmasks previously hidden infections, therapy needs to be given fairly slowly to minimize what is called a die-off reaction from occurring, in which a patient experiences transient flu symptoms. This scenario can be avoided by your doctor dosing the heparin at a low amount and gradually increasing it as tolerated, getting lenty of rest, drinking plenty of fluids, and controling symptoms with Tylenol or Motrin.
October 18th, 2007 at 5:50 pm
Many years ago I was told that FM could be “cured” or at least improved by the use of heparin. This info was presented by a local dentist who got the info from a MD in Florida who said the FDA wouldn’t get behind him as there wasn’t a clear cause for acquiring the disease. I would like to know more on this topic. Where could I find info on this, and FFC offering this type of treatment?
November 6th, 2007 at 4:09 am
Question -
I am a 32yo female diagnosed with FM, and upon recent trip to ER for calf pain of >5 days, found that my d-dimer was 817! CT w contrast showed no significance, which was a relief. Could this be related to my FM?
Carrie
December 8th, 2007 at 12:38 pm
So good to read this by Dr Cuddapah. There are very few Dr’s out there who even know about using Heparin in this way. I have not been put on Heparin yet, but know that it is going to be a good next step for me, as I have Lyme disease and Bartonella, which has also been known to cause coagultation problems. I would be interested to read what Dr Cuddapah thinks about these diseases emerging as the root of many Fibromyalgia and Chronic Fatigue Patients problem. Thank you!
January 1st, 2008 at 11:34 am
I have CFS and fibromyalgia and am factor 5 positive. What part if any is that playing in my conditions?
January 4th, 2008 at 4:47 pm
Carrie,
It’s a possibility that it could be related to Fibromyalgia. Is there a chance the calf pain may be related to a deep venous thrombosis, especially with elevated D-dimer levels? If so, a lower ext. ultrasound would be a preferable diagnositic modality to CT to rule out. If normal, it may very well be related to FM.
Keep me posted and good luck!
Dr. Cuddapah
January 4th, 2008 at 4:48 pm
Crystal,
Thanks for reading my blog on hypercoagulable conditions. Yes, this may very well be a significant root cause to fibromyalgia related symptoms, especially when other modalities such as bioidentical hormones and anti-microbials fail to treat symptoms. It is amazing how many of my patients finally found relief for their symptoms, many who have been able to successfully discontinue narcotic pain medications.
Best of luck
Dr. Cuddapah
January 4th, 2008 at 4:50 pm
Chris,
Hi, and great question! Factor 5 (+) may play a role; however, many other tests need to be ranto make sure this is what is going on. I would suggest checking d-dimer levels, TAT complex, prothrombin fragment 1.2, fibrinogen, and PAI-1 levels. At that point you should be able to get a clearer picture of what is actually going on.
Best of luck!
Dr. Cuddapah
March 7th, 2008 at 11:14 am
In my first visit to F&F Center in Atlanta last month, Dr. Cuddapah explained the Soluble Fibrin Monomer (SFM) problem and gave me a handout to study about hypercoagulable state, CFS/FM, and heparin treatments. I just read online (and heard on NPR’s All Things Considered, March 6, 2008) about 19 deaths related to contaminated heparin supplied by Baxter Intntl., plus illnesses in Germany where other suppliers are used. What is F&F Center doing to make sure its heparin supply is safe?
I’m scheduled to see Dr. Cuddapah next week and am curious about heparin treatment . . . all I can find online are studies by a laboratory scientist, David Berg, and one physician, Kent Holtorf. Have any controlled studies or clinical trials of heparin for CFS/FM been done or reported in peer-reviewed medical journals? I’d like to read more before I embark on “low dose heparin and substances to break up the fibrin.”
Thanks!
Laura in Statesboro
March 9th, 2008 at 4:23 pm
I had a doctor do a test for hypercoagulation(ISAC Panel) by HEMEX labs in 2001. The SFM was 22 with ref 0-17, CD62P 18 ref 0-18,CD62P + ADP 36 ref 39-80, and plt activation index 1+ . The doctor stated these results indicated a “CHRONIC activation in bone marrow”. When I asked him what type of infection it could be he stated HHV-6 but did not want to test me. He started me on heparin and I did have flu like symptoms but then improved dramatically. He stopped the heparin after a short period because I got better and I slowly have declined. I have not felt my health has been anywhere as good since. Does the heparin draw the infection out so it is easier to detect. What process do you take in these situations? Thanks.
April 2nd, 2008 at 2:02 pm
Finally! Your comments about hyper coagulation sounds just like my complaints to my dr. I have a current diagnosis of Chronic myofascial pain, sleep apnea, insomnia and now chronic sinusitis. I currently have not been able to use my CPAP machine as it flares the sinusitis. I am being referred to ENT for June. My complaints have been that my muscles feel like they aren’t getting the oxygen. All tests for neuropathy, lyme disease, diabetes, etc, etc, have been reported to me as normal. How do I find out if hyper coagulation is indeed my issue? What tests do I ask for?