Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I go to my doctor tomorrow and get the results from all those blood tests!
It will be interesting to see what turns up...
To recap, they are testing for markers in the blood that indicate;
hypercoagalation
Buildup of Fibrin
Lyme's disease
Lupus
and I think inflammation
Actually the doctor should have done these tests 4 years ago, but better late then never! I don't know if it would be better to have another known disease or to continue to with FM... I mean, you are all such nice people and all, I would have to go to a new group....
We will see!
Take care,
Jon
It will be interesting to see what turns up...
To recap, they are testing for markers in the blood that indicate;
hypercoagalation
Buildup of Fibrin
Lyme's disease
Lupus
and I think inflammation
Actually the doctor should have done these tests 4 years ago, but better late then never! I don't know if it would be better to have another known disease or to continue to with FM... I mean, you are all such nice people and all, I would have to go to a new group....
We will see!
Take care,
Jon
Here's hoping for Best results!
Sue
And you are always welcome here no matter what you have.
I also have myofascial Pain syndrome so I went to that site and If you post something it takes days for someone to respond (thats if someone does respond) So I stopped visiting that site. This is my home site for all my questions and complants.
Take care,
Diane
Take care,
Jon
Went to the doctors,I tested positive for fibrin build up, and hypercoagilation. My C3a was low,and my C4a was 6124 with a normal range of 0- 2830. It took me a while to figure this out, but when the markers are both high, then you have lymes, but when C3a is low and C4a is high it is either FM or Lupus. I haven't figured out the other tests yet, but the doctor said it is FM. He is starting me on injections of Heperin, to clean out the fibrin sludge, along with a higher dose of the enzymes that eat up the fibrin. The Heprin in a decoagalant, so I will have to be careful to not get any cuts, etc.
I have to give my self shots once a day in the lower abdomen, it is supposed to cause bruising, and maybe flu like symptoms, while the gunk is being cleaned out. Hope this helps reduce the pain, should know in about 4 months.
This will make me a lean mean fighting machine... :0)
I will let you all know how it goes!
Jon
So it looks like you guys are stuck with me!
Hypercoagulation
The CFS/FM Plot Thickens
Melissa Kaplan, The Carousel Network News, 8(5), 2001
A simplified introduction into hypercoagulable state...
Research conducted by Dr. David Berg and others at Hemex Laboratories1 has found hypercoagulation to be a factor in many patients with chronic fatigue syndrome (CFS), fibromyalgia (FM), myofascial pain syndrome (MPS), and other disorders such as osteonecrosis (bone loss due to inadequate blood supply), and fetal loss.
Hypercoagulation (thickened blood) results from fibrin being deposited in small blood vessels. Fibrin is the body's natural bandaid: strands of fibrin form across a defect (wound, tear) in the walls of blood vessels, forming a mesh that holds platelets and blood cells. This beneficial clotting of cellular matter and fibrin strands plugs the leak, so to speak, holding things together until the body starts to repair itself.
Fibrin production is the last stage in a complex clotting process. The process itself starts off with the release of thrombin which in turn results in the production of soluble fibrin monomer (SFM), a sticky protein that increases blood viscosity. This leads to the deposit of fibrin on the endothelial cells that line the wall of the blood vessels. Under the normal conditions, it takes only a single burst of thrombin to generate a large amount of SFM which in turns produces sufficient amounts of fibrin to clot the defect. Testing of many patients diagnosed with CFS, FM, MPS shows that the thrombin-SFM-fibrin process is not working properly. Instead of a single burst of thrombin producing the amount of SFM needed, the thrombin keeps being produced at low levels. Instead of clots being formed, however, the result is that blood becomes increasingly thickened. The body's own ability to thin blood and break up clots is impaired because the fibrin smothering the endothelial cells prevents those cells from releasing heparans.
There are two different ways this scenario can be played out. The first is thrombinphilia, "thrombin loving", where the body keeps producing thrombin because the normal control that would prevent excessive or inappropriate thrombin generation fail, do not exist, or have somehow been overridden so the body keeps producing thrombin at low levels. The controller is anti-thrombin (AT). AT combines with thrombin to form thrombin/anti-thrombin (T/AT). Normally, when the endothelial cells release heparans, the release activates the AT, which acts slowly to reduce the thrombin. Not enough AT may be produced, or the amount may not be enough to keep up with the continuous thrombin production. Another possible cause is hypofibrinolysis, where too little heparans, the body's natural clot busters, is produced or circulated. So, in the (simplified) three part process (thrombin, antithrombin, heparans), one or more parts is dysregulated or rendered insufficient, leading to hypercoagulation.
Berg states that there are at least three possible causes for this thrombin malfunction:
Viruses, bacteria and/or parasites can activate certain antibodies in the immune system, which in this case trigger the continual production of thrombin, generating excessive SFM and fibrin.
Predispositional genetic defect in coagulation regulatory proteins (protein C, protein S, Factor VL, prothrombin gene mutation, PAI-1, Lp(a), or elevated homocysteine.
Chemical exposure can result in changes that trigger the coagulation process.
The results of this thickened blood are widespread, due to the role blood plays as the major transport of nutrients and oxygen throughout the body:
Thicker blood is harder to pump.
Muscle, nerve, bone and organs function is impaired because of the inability of sufficient nutrients and oxygen to pass through the capillaries.
The fibrin coating the vessel walls, the endothelial cells are no longer able to release heparans, the body's natural blood thinner.
Hypercoagulation, by depriving the bowel of blood, may be a major factor in Irritable Bowel Disease.
Viruses and bacteria may be hidden under the fibrin layer coating the vessel walls, essentially hiding them from antibiotic and antiviral treatments.
Some of the symptoms associated with hypercoagulation will surprise few with CFS and/or FM: brainfog, cognitive dysfunction, digestion problems, fatigue, and generalize malaise.
Because this hypercoagulability does not result in an immediate thrombosis (100% occlusion), but rather in fibrin deposition (50-95%), Berg, et al.2 suggest that an appropriate name for this antiphospholipid antibody process would be Immune System Activation of Coagulation (ISAC) syndrome.
Although I am sorry you have fibro, I am glad you will be sticking around this group.
I am curious about this treatment. Is this a proven treatment for fibro and has there been research done? Or is this a treatment you have wanted to try after research on your own?
This is not a "mainstream" treatment, however there have been double blind studies and doctors have had good results. My doctor's group has been doing this protocol since 2004. My doctor has prescribed Heparin injections for 65 patients with FM. They have had a high success rate, in reducing the symptoms of CFS and FM. (hopefully I will be in this group!). They have already helped much in eliminating a lot of the symptoms, brain fog, blurred vision, fatigue. Now if I can have some pain free days, I will be very happy.
Took my first shot tonight, no bruises...
I hope you are feeling better with this new information and treatment. It sounds like you doctor is trying to help.