Blood clots due to fibro ?? MS and fibro ??

Discussion in 'Fibromyalgia Main Forum' started by chelseafan, Jan 6, 2006.

  1. chelseafan

    chelseafan New Member

    My wife is in hospital at the minute and was told that she has blood clots in her lungs and legs which have came about due to her fibromyalgia and was also told that fibromyalgia can develop or is linked to MS. has anyone heard of either of these. If you have i would really appreciate any response.

    thanks :(
  2. tansy

    tansy New Member

    I had a major pulmonary embolism and additional clots in my pelvic area before I became long term ill. Issues related to an over reactive immune response and coagulopathies are inherited from one side of my family.

    David Berg of Hemex found ISAC, a form of coagulation present in 90% with ME/CFS and lyme disease, with a slightly lower % in FM. 75% with ME/CFS and lyme tested positive for heriditary coagulation risks when tested.

    I was suspected of having MS and systemic lupus, it was ME/CFS and chronic infections including borreliosis that is often referred to as late stage lyme disease. Lyme disease is called the great imitator, along with a few other chronic infections, it can cause symptoms similar to MS and these infections have been found in some patients diagnosed with MS.

    Though ISAC is not the same as actual DVTs etc, in those prone to them, it can increase the risks of blood clots.

    There's some good info on the following sites -

    http://www.anapsid.org/cnd/diffdx/hypercoagulation.html

    http://lassesen.com/cfids/coagulation_triggers.htm

    Sorry to hear your wife has these blood clots, I hope they are dealt with quickly and effectively so she soon recovers.

    Tansy[This Message was Edited on 01/06/2006]
  3. darude

    darude New Member

    My mother in law is in hospital with clots and her only symptom was pain muscle cramps in her legs!!!!!!!!!What were your wife symptoms??????????
  4. darude

    darude New Member

    Please let us know how she is!!!!!!!!!!!!!!
  5. lenasvn

    lenasvn New Member

    I found the following information, it might be helpful.

    Chronic Fatigue Syndrome / Fibromyalgia and the Coagulation System

    By David Berg, Harold Harrison, Joseph Brewer, and Carol Ann Ryser
    There is an increasingly large body of publications that link CFS / FM with a hypercoagulable condition. From blood clots to the worst case scenario, DIC, hypercoagulability has been looked at from the perspective of the end point being a blood clot, instead of an ongoing process, Low Level Activation of Coagulation (LLAC). From the first poster presentation at the AACFS Cambridge meeting (1998) to national physician organization presentations (2003-2004), coagulation has become a major component, both in diagnosis and treatment protocols, for CFS / FM patients.

    In November, 1998, Brewer presented a poster to AACFS meeting on HHV6. Combining pathogens and coagulation led to the formation of a model that pathogens could trigger a hypercoagulable state in susceptible patients. What makes a patient susceptible? According to Coleman & Hirsch Textbook of Hemostasis & Thrombosis (2001), 20 - 25% of the population has a coagulation protein defect. Our studies of over 500 CFS/FM patients have shown 1-3 defects in >80% of those tested. Using the Immune System Activation of Coagulation (ISAC) panel, blinded samples from multiple locations were tested and the data published in November, 1999 (Blood Coagulation & Fibrinolysis). Patients were separated from normal individuals based on detection of coagulation activation in the patients. This article also presented the model of pathogen induced activation of coagulation in CFS/FM patients. The conclusion was that pathogens could induce antibodies similar to those found in APS syndrome, triggering activation of coagulation. Many articles now have shown how pathogens trigger coagulation.

    In Rheumatology (2000), Jeschonneck presented data that Fibromyalgia is due to “Localized Hypoxia”. Tender points were characterized as having reduced blood flow, moth eaten fibers in the capillaries, swollen endothelial cells (EC), increased rouleau formation, decreased cellular ATP and ADP production with increased AMP, decreased skin temperature, vasoconstriction of unknown pathophysiology and decreased oxygen or local hypoxia in the muscle tissues. An explanation of all of these observations could be coagulation activation resulting in Soluble Fibrin Monomers (SFM) formation resulting in fibrin deposition on the EC surfaces and seen on electron microscopy. SFM also increases blood viscosity, reducing blood flow.

    A major piece of the puzzle was presented at the International Society on Thrombosis and Haemostasis meeting in England (2003) where Nemerson showed that 1 micron (Fm) of fibrin deposition in a capillary (8-10 micron diameter) changed the oxygen diffusion time from the RBC to the tissues around the capillary from 2 seconds to greater than 5 MINUTES. This leads to tissue hypoxia and malnutrition as well as build up of waste products in the tissues. Other authors have demonstrated waste product accumulation in tissues. This is the pathology on the cellular level in CFS/FM patients.

    Low level activation of coagulation is a major contributor in the pathophysiology of CFS/FM.

    I havent heard that FMS can develop into MS, but I have heard that treatments that RA patients recieve can. I am treated for RA. There are many similarities between MS and FM, though.
  6. MamaR

    MamaR New Member

    I haven't actually been told about the MS and Fibro link....but after so much research I have thought this myself.

    Just still so much that we don't know....but wonder how much the medical field knows that we haven't been told yet?!!

    This sounds serious. We will be waiting to hear. Will pray that all turns out well!

    MamaR
  7. amberbee

    amberbee New Member

    my wife has fibromyalgia,neuropathy and brittle diabetes. Due to the severity of these combined she spends quite alot of time in bed upstairs as she cannot get down the stairs unless someone is there to help her down. When she starts to walk around her knees,legs,ankles and feet swell up and cause her alot of pain so she has to therefore lie down again and keep her legs straight which in turn is avicious circle as staying still can cause blood clots.
    The blood clot in her lung she had a very sharp pain from the centre of her chest around her back on the left hand side and she found it very hard to breathe and said it felt like someone was sitting on her. It also travelled up her shoulder and down to the back again and down her left arm.
    I hope this helps in some way and give my wishes to your mother in law.
  8. amberbee

    amberbee New Member

    thankyou for taking the time to reply. My wife has to go for a CT scan to check her internal organs as she has been taking pain killers for some time and they fear she may have damaged her liver/kidney,etc... She also has to go for another scan which consists of radiactive gas and then blue dye to check for the blood clots. As for the MS link my wife was told that sometimes MS can develop from fibromyalgia depending on the severity of the individual case. The reason my wife was told this is because she has a severe case of fibromyalgia and they wanted her to know the possibilities if things were to get worse but the surgeon told her they would do everything they can to make day to day life easier for her.

    Thanks again mamar, take care x
  9. renae1979

    renae1979 New Member

    I actually have two genetic mutations which put me a very high risk for serious blood clots. However, these are genetic and unrelated to my fibro. My sister has them too and she has experienced clots, a high risk pregnancy, etc. but doesn't have fibro or CFS or anything of the sort.

    It is possible that your wife my have a gene mutation as well. The most common of the conditions I have is the Lieden Factor V mutation.
  10. sydneysider

    sydneysider Member

    Most FM sufferers are suspected of MS, as some of the symptoms are the same. However, I don't see a link here. None of the FM people that I know have MS.

    It is possible to have both. Most people with FM have at least one other dissorder. I don't think that there is a large number of people with both FM and MS, even amongst long term FM sufferers.
  11. Stormie1949

    Stormie1949 New Member

    Hi chelseafan,

    I have had Chronic Fatigue for 12 years and was diagnosed with Fibromyalgia in 1998. In 2003 I was ill with what the doctors called pneumonia for 3 weeks, until I was so sick I went to the ER and they did a VQ scan. I had 3 pulmonary ebolisms in my right lung. They admitted me for 7 days, put me on a heprin drip and I left the hospital on Coumidin for 1 1/2 years. They tell me I am not at risk anymore but i worry everytime I have pains in my legs, which is often. The doctors never said it was from the CIFDS/Fibro, but reading all the posting here makes me wonder. I will say a prayer for your wife. God Bless you both.

    Stormie
  12. tansy

    tansy New Member

    atm its natto. I also take turmeric and fish oil which help with this and other problems.

    My PE was treated with heparin then arvin/ancrod through a cardiac capheter after my scan was done. After that I was on warfarin, and put on warfarin again after the one pregnancy that went full term. I felt less well whilst on warfarin and after each of these courses, felt a lot better a while after not taking it.

    Enzymes are safer and easier than being on warfarin, there fewer risks and they are not contraindicated with other meds (except warfarin etc), supps, or herbs.

    ISAC, which is common in these DDs, seems to respond better to enzymes and heparin than it does to aspirin or warfarin/coumadin.

    love, Tansy

    [This Message was Edited on 01/09/2006]
  13. darude

    darude New Member

    My mother in law is out of hospital and they dissolved the clots. Phew!!!!!!!!!!! Yes I know several people here that have fms and later on turned into MS!!!!!!!!!! Especially now that they are doing MRIS of brain and spine and can see it.
  14. km

    km New Member

    I THINK IT WOULD BE MUCH EAISER TO GET CLOTS 4 US FIBRO SUFFERS;BUT I THINK ALOT OF THE REASONS WOULD BE RELATED TO A LACK OF REGULAR EXERCISE...
  15. sabimax

    sabimax New Member

    but on my MS website I post on...(dont have MS but have many MS symptoms..and trying to figure out what I have) there are many on there with both Fibro anD MS....and also ..many that are diagnosed with fibro and later on find out about MS.....so it depends on the drs..getting it right....with diagnosing...

    but there are many with both....so you all know....sarah
  16. MamaR

    MamaR New Member

    I am so sorry that I haven't been here for awhile! I am so glad that things aren't any worse for you! I wish you healing!!!!

    I will try to check in more often....just been in a lot of pain lately.

    Take care....MamaR