# blood clotting disorders



## Guest (Jan 17, 2000)

I was diagnosed with CFS in 1990. Last February I had pulmonary embolsim brought on by a gene mutation in the clotting Factor V and also a resistance to Protein C. This was all brought on by the flu virus. I just want to know if anyone out there has had this happen to them and what the circumstances were. I now have to live on Warfarin (generic Coumadin) for the rest of my life, have regular pro-times, along with living with CFS.


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## moldie (Sep 25, 1999)

I'd like to welcome you DSG. I am sorry, I have never heard of anything like that. It sounds kind of scarey. If you want to tell us more, I am sure others would be interested to hear about it. How old are you? I see you are a single mom. How old is/are your kid/s?


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## Guest (Jan 19, 2000)

Thanks for the welcome, Moldie. I am 41 and my children are Marisa 17 and Tyler 14.My experience last year was very weird. I had the flu and didn't know it, because it mimics my CFS symptoms. I thought I was just having a rough spell. This was the middle of January '99. By the first week in February, I could barely walk the lenght of my house. When I went to my Dr. he sent me for chest x-rays and lung scans and then told me to go home. He called in the late afternoon to say I had pulmonary embolism, have someone run to the drugstore to pick up the warfarin (coumadin) for me to start that night. He did not hospitalize me because I was past the "critical stage"! There was no reason for me to have the clots, no injury etc. He did some blood tests and found out I had a combination of 2 blood disorders that cause excessive clotting. My Dr said it was brought on by the flu virus. That viruses can be very damaging, especially with my compromised immune system, and it messed with the genetic makeup of my blood.It is not commom, and even less with the 2 together. It deals with Factor V clotting. But the short version is I don't have enough protein C in my blood, and what I do have my body has a resistance to it. It would be interesting to find anyone else this has happened to, and that they also have CFS.


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## moldie (Sep 25, 1999)

I have 2 sons 21 and 18 still living at home and going to a local University. Are your children very supportive? Were you having chest pain, shortness of breath, and coughing up blood with your pulmonary embolism? Did they report many cases of this with that kind of flu? I think my grandmother may have had something like that, but the story is sketchy. She reportedly had Parkinson's at an eary age and died in the hospital, coughing up blood right before she died. That's all my mother could tell me. What are your symptoms of CFS exactly?


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## Guest (Jan 21, 2000)

Hi Moldie, My kids are pretty supportive. When I need the extra help, they are always willing. My daughter has been known to stop in and fix me dinner if she knows I'm having a bad day and she is with her dad.As far as symptoms for the PE, there was shortness of breath, elevated heart rate when I tried to do anything and some occasional pain between my shoulder blades. It was the back pain I connected with. I had PE in 1985, so the discomfort felt oddly familiar. I had no chest pain or coughing blood. Within 2 weeks of my blood test, there were 2 other people diagnosed with the same blood disorder(Only the Factor V part) and those people didn't end up with PE and didn't have the flu.) It's a mystery!!My CFS symptoms vary from day to day or week to week. Always battling the extreme fatigue. Cognitive problems, joint pain, head pain, sleep disorders, depression and lately quite a bit of trouble with my stomach and swallowing. Vision trouble, sore throats all seem to be the constant. Then other symptoms vascilate, like the nausea, fever/chills, not being able to stand commotion (like grocery shopping) or any noise to name a few. Do you have CFS or Fibromyalgia or both? I believe, because of my history, they are definitely 2 different illnesses. Many believe they are one in the same. I am starting a new antidepressant tomorrow, Celexa. I tried to go without one, but the negative thoughts are too strong. Maybe that would be a good posting, the different antidepressants and what is/not working for people. Later


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## moldie (Sep 25, 1999)

DSG, I was diagnosed with Fibro about 10yrs ago. I went to see a doctor years before that with complaints of fatigue, but he attributed it to my working and raising a family. Before I was diagnosed with Fibro, I had some strange things occur. One was waking up with tendonitis of the achilles heel. I would get this a couple times a year for a few years for no explainable reason/injury. Also one year when I decided to take the flu vaccine, I had the aches and pains flu about five times during that year. Another year I had come down with a cough that wouldn't quit for 8wks. Every hour, almost on the hour, even during the night, I would cough and cough until I coughed up secretions. For quite a few years now, I hack up this gross looking phlegm on a daily basis. Since I was diagnosed, I've had an infection under a crown. I was on antibiotics for adult oncet acne at the time, and had a vag and bladder infection. I also developed a frequent soft stooling, bloating and proctalgia problem soon after. At that time I also had a foot-skin peeling problem. When I went on Diflucan (antifungal) a few years later because of a suspected yeast problem, the foot peeling went away as well as the stooling and painful proctalgia. Another problem I have is not being able to tolerate being on my feet for more than a couple of hrs. at a time without abdominal swelling and pain. I get times where I can't stand noise or bright lights either. I get this fog or haze, feel over-whelming fatigued, and become irritable. Then I have to retreat to a quiet darkened for a 10 min to hour break to restore myself. I notice you have another posting where I will address the rest. Have they ruled out MS and Fibro for you? The fever, sore throats as well as headaches are things that don't exactly fit for me on a regular basis. There are certainly over-lapping symptoms of fibro and cfs. It is not yet clear to me if they come from the same infection. Sometimes the hardest thing is not knowing what one is dealing with. [This message has been edited by moldie (edited 01-21-2000).]


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## Guest (Jan 21, 2000)

Thanks tons for both replies, Moldie. I am calling my psychologist today. I get so frustrated because I would like to be OK at least mentally and it never sticks! At this point I think it is ruining my relationship also. I have the coughing also, sometimes so hard it makes me gag. It usually happens in the morning or when my fatigue level is more. I was checked out for MS, Sjogrens and Lupus in '92. All were negative. Do I have fibro too? Maybe, who knows. I have the trigger points and occasional joint pain, but I don't experience the severe pain alot of fibro people do. I had a massage once and the gal asked me if I had fibro because she couldn't get my lumps to go away. Whe worked so hard it made me sick!!Because of your not being able to stand for long periods, are you on disability now? It is hard for others to understand the constant grieving we go through. Another thing that is hard on me is weight gain. I have gained a little over 30 pounds with the CFS. This is hard on me because I have horrible circulation, my R leg is always a little swollen. It has been hard for me to lose any without being able to exercise much and when I'm depressed the food addiction takes over. Our stuff is such a round robin illness. One thing gets the huge ball rolling. When tests are negative the subject is dropped and attributed to "just my CFS".


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## moldie (Sep 25, 1999)

DSG, Your psychologist might have to refer you to a psychiatist because I don't think they can order medications. Even your Physician might be able to order medications for depression. Doctors who treat people with fibro, often order antidepressant medication to help them sleep through the night and hopefully increase their serotonin levels. Usually they are ordered in smaller doses if used just for sleep though. They often take three weeks to work in your system, so it takes time. I am not on disability as yet, but am currently working with a disability lawyer for a temporary period of the time that I had the proctalgia pain stooling problem. I figured I could always get a sitting job. Since last Mon., however, I've had constant abdominal swelling and discomfort after a one time 2hr shopping spree. Usually the next day I am back to normal, but not this time. I'm hoping this too shall pass. You didn't mention IBS, do you get this too? Except for my abdominal swelling I've had trouble gaining wait since the fungal infection. I have borderline Raynaud's Syndrome and get cold very easily. My legs do not swell though. Before I knew I had fibro, I did get the neck and shoulder pain; once from shaking a can of paint, and once when washing my hair. Both times painful with numbness and tingling down the arms, and requiring therapy. I have since learned the value of neck exercises first thing in the morning (among other stretching), and warm moist heat, trigger point therapy and massage at the first sign of pain. I use a micro-waveable "Bed Buddy" and a "Thera-cane" for this.Please come back and tell us how you are doing.


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## Guest (Jan 25, 2000)

Hey Moldie, I'll catch ya in both topics.I have minor IBS, barely there, considering what you all go through!! I have major pain in the intestines sometimes, I call it intestinal labor







. I vascilate between constipation/diahrrea. High abdominal swelling, like right under the sternum and major pain with that too. I haven't figured if this is IBS or GERD. I too have Raynauds. The tips of my fingers turn completely white and it can happen in the frozen foods at the store. My internal thermostat is also out of whack. Mostly on the cold side. I've been at soccer games in the summer in 90degree heat and have a blanket wrapped around me! Then people DO think you're nuts.I've enjoyed visiting with people! I want to make it to a chat night. Do you do that? This week, I will be at my parents for a visit so I'll miss, but am anxious to next week. Thanks again Moldie







DSG (Dee Dee)


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