Hello everyone, I was able to have my own INR machine. I report directly to the OHSU in Portland Oregon. My INR's have not been stabilize yet I am eating the same things and my blood tests are accurate and consistent.
My body has not been cooperating since a month after surgery. My body seizes up constantly and my left leg continues to throb, swell and not bend well. It's been two years since the DVT and PE. My brain fog with major headaches has increased again. I am seeing a chiropractor and physical therapist and a nutritionist soon.
I know I am doing all the things that I need to do with the exception of maybe overdoing physical work. We are remodeling and expanding our outreach center and this requires long hours and lots of physical work. My body simply does not relate well to an overdose of work like it used too. I'm finding that I have limits now even in my thinking. Seems my fine motor skills are slipping also. Paperwork is difficult as I do seem to process specific details anymore like AFP numbers and names etc. Rest is a consistent need, I used to run off of little sleep and go forever, seems the days are slowing down now.
My girlfriend has MS and her symptoms seem so similar to mine, she stiffens up at the end of the day, as I do. Brain fog is also a similar trait. My brother has MS and causes me to think.
It has taken my stomach since October to heal from the surgery, I unfortunately got a staff infection and shingles. I thought I was doing great then everything hit at once and the surgery wounds stopped healing and kept opening up. I am a neat and clean freak so it was frustrating to have such a toss with my body no matter what I did to prevent it.
Immunity is a struggle, working on this and my weight now...it is a slow journey. I am far from overweight yet I am used to a small frame and since the PE and DVT I put on 40 pounds. The hysterectomy didn't help that matter, but I am slowly working on it as my body allows.
So that is my update...would like to ask a question related to body seizing up....I know many of you have this common barrier. Any suggestions as to what to work towards for pain relief? The pain is so intense sometimes from the seizing. Doctors here are not open to much as far as medication to treat it, I was told Plaquinil yet they denied me this due to eye health. I even recently tried the cannabis rubbing cream on the joints, it only helped a little bit and very temporary.
One more question...I am taking fish oil now and the RN that trained me on my own machine said that my blood is extremely thick and I may find myself more suited for a higher INR. What are some of the levels any of you feel best at? I am currently in range of 3.0 to 3.5. What does higher feel like? I'm concerned for bleeding with it higher...do any of you feel better and find success at higher INR?
One thing I do find sooo helpful is constant hydration, my fluid intake is more then the average person, it certainly helps all the way around even with headaches
Becca
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Glad to hear that you have got your own machine now! I am also at 3.0 - 3.5. in INR. If I were you I would aim for at least 3.5. Do you have a difference between the lab vein-value and the machine-value? (I have because I have Lupus Anticoagulant)
This is the only thing I can answer. I have no pain.
Hi, it sounds like you are on the right track, Plaquenil suits many people and my daughter started on it slowly and built up on it. I guess they are checking your Thyroid regularly, this is important alongside checking your levels of D, B and Iron alongside all the other things already being done. Some of find less pain with the exclusion of gluten in the diet, but this is quite a big change to make. I personally will never go back on it. MaryF
I think the Plaquenil causes damage to the eyes. That is why they're not giving it to you. If you already have damage in your eyes, the Plaquenil will make it worse. You have good doctors to have checked you before they put you on that med. I personally think that if your INR becomes too hard to manage, even with your home testing machine, they should put you on Lovenox or Clexane. I hope I spelled those properly. I'm kind of in the same boat as you are right now. Out of the blue my INR just went down to 1.5 and it's taking a long time to get it just above a 2.0. I'm going to get my next INR draw in a few days and I hope it's above three this time. If not, I might need to increase my dose of Warfarin again. I wanted to ask you of you have been examined for Post Thrombotic Syndrome in your DVT leg?That is what I have been diagnosed with. I don't have a lot of swelling in my leg - I do have some though from time to time. What I have is a lot of pain and a definite loss of mobility in my DVT leg. I have to pace myself just walking or I will be in extreme pain and limping for a day if I push myself. I have an almost completely occluded Popliteal vein. I take pain killers daily to manage my pain. I also get stiffness in my arms if I work too hard. I never attributed this to the APS. If I write more than three sentences with a pencil, my hand locks up; almost like it's burning with pain. I also have burning in my legs, both the good one and the DVT one if I walk too far.
I guess you are like me, you have to get used to your new normal. You have to find out how far you can push yourself before you need to rest and then adjust your activity levels accordingly. I don't think more work/exercise is going to lead to increased capabilities. At least in my case it has not. I've been forcing myself to walk up and down the stairs three times a day here at the house; and in three years I have not regained any of the strength I used to have in my DVT leg prior to my blood clots. I can't climb up or down the stairs with both legs; and I have to go really slow, or I will fall. Also, if I climb up the stairs too fast, something will pop, and I will be in a lot of pain. I feel embarrassed in public to walk so deformed up and down the steps to get to my doctors office. I just have to ignore my feelings of being inadequate and push forward. I have to slow down and let the old people walk past me sometimes . This has all taken me some time to get used to. This disease has hit me hard since I began clotting three years ago. I also knew when my INR was low because I could feel and hear/feel the blood pumping inside my neck, ears, and my eyesight was pulsating every time my heart would beat. Now that my Warfarin dose has been increased, I do not feel that anymore. Don't be afraid of the higher INR. I have cut myself with an INR close to 3.0 and the bleeding stopped pretty quickly. It is like Kirsten says; we all have really thick blood and don't really have to worry about bleeding that much. Any how, I hope you get your INR under control with your self-tester. I hope you feel better soon. Hugs
Also, please let us know how the self-tester works out. I want to know how accurate it is. I will be returning to truck driving soon and I can't really manage my INR that good being on the road. I'm going to be away from home for at least 9 months straight. I will have to use a self-tester, switch to Lovenox, or get a blood test every month on the road and pray that my INR behaves itself. It's not going to be an ideal situation unless I can take the INR tester with me and manage my own INR between my hectic work schedule. Any how, I really hope you feel better and regain some of your pre-clot activity levels. You sound like the kind of person who likes to stay busy. That's a good thing.
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