Hi all. Despite now being settled on warfarin inr 3-4 and hydrocychloroquine, I have developed some new symptoms. Memory fog with my inr at 3.6, pain back of left leg and pins and needles in that foot.
For a few days now, incredibly sore right knee. Had kept me awake two nights running. Unlike any pain I have had before - sort of burning deep inside. It feels as if it should be hugely swollen, though it isn't. Maybe just slightly.
Any ideas? Not sure my GP has much idea about my various ailments, I am at St Thomas's next on December 15
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Fusch
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You need to be seen by your GP today, just to rule things out, good luck I wouldn't wait for your appointment although the Doctors as St Thomas's are great
I was just diagnosed withAPS 3 weeks ago and getting very bad joint pains,, pins and needles and bad FATIGUE! My Hemotologist has no answers as usual! I think at this pount I no more about this disease than he does! Good luck and go to Hemotologist or Rheumotologist! God Bless and keep u well and strong!!!
Do feel free to email the charity website to your GP, marked for their attention via the secretary's email address: hughes-syndrome.org/
Also while you await that appointment at St Thomas' get tests done by the GP for Iron, Vitamin D and B12, plus a full Thyroid panel, as if any of this is not right it ill add to your general fatigue and pain. Keep in touch and let us know how you are doing.
I was already seen at guys and they tested b12 etc and added hydroxochloroquine to the warfarin prescribed by my Haemo. Also confirmed inr 3-4 and fragmin if it drops below 3.
Guys then said I should shift from b hunt clinic at guys to get clinic at St Thomas's and also see Paul Holmes there. (Neurology)
So all that is quite good but now this joint pain.
If that pain inside your leg is not abating, I would consider a swift check up and get them to do a D Dimer test just to rule out a clot!. Glad they did the B12, presumably Iron and D also, these need regular testing. Most of the UK get low in vitamin D, and it is important to keep that at the right level. MaryF
Mary shud my sister and her family be tested for this? I'm sure my Mom had this! She suffers from blood clots too at young age maybe 40! Pregnancy problems ! 3 miscarriages b4 me and older sis!
Yes defintely, and the blood tests do need to be done in a hospital in case the samples are left lying around to long with the GP practice, awaiting collection, as they are time sensitive. hughes-syndrome.org/about-h...
Thank You Mary! I'm very greatful for this site! I feel like there's a light at the end of the tunnel! It seems that we all go thru docs not knowing enuf or caring! I guess because it's mostly a woman's disease! As usual we seem to b treated as second class citizens! Thanks! GODSPEED!
Hi Mary! I c that many people have joint pain! I get it about a half an hour after I lay down! The legs start, then ribs and arms! It seem like I have the flu every night! Don't sleep! The pains is bad! I don't know WHY this happens! I also have been a very active person my whole life! Now I'm in bed every other day! I don't like this quality of life! The fatigue is overwhelming! I imagine if I read "Sticky Blood," By Kay Thackery I may understand better! I also have PV (Polycythemia Vera.) With that Precancerous Blood disorder they say my blood is like sludge! I'm on Plavix and 10 Mg or Warfarin a day! I think that to has side effects! Does that effect the fatigue??? I have been newly diagnosed and am overwhelmed with 2 blood diseases! I pray we are all treated in a better way and we have more good days than bad! Why r the docs so difficult? Do u rink it's because they just don't no and can't admit they don't know because of The God Complex! I find it disconcerting and want to shake them! My Doc a Hemotologist/Oncologist is very kind , but makes lite of it all! I no many of you r sick of hearing this! Please let me apologize ahead of time! It's just I'm new to this and find myself depressed and saddened that my life has change and there's just no one who understands! Discluding all you kind and understanding people! Thank Y'All for the input! I'm from Long Island, NEW YORK, USA! I cud go into NYC at anytime and do more, but don't have the energy and my care here is good!
my fatigue is still there, but better since optimizing my vitamin D, going gluten free and also making sure my Thyroid is working correctly which it was not. MaryF
Hi I have horrible fatigue and joint pain every night I have the flu till about 4:30 am! My doc gave me muscle relaxer to sleep, but only tuk half the dosage! Never slept! I also have RLS and take requip for that it helps sometimes! I do have eye troubles since I'm a kid and hope I'll b fine with that! Have eye appt next week! What do they say about ur joint pains? Mine real bad too just hate this way of life! But I try hard to put on a face and strong front for my friends and family cuz they can't Andre it so I do all alone! No support system! Are you from the UK? My Dad from Penz Anz a real pirate! God Bless You and I pray for you and all of us who suffer from this crazy thing!
OMG YES! I go to sleep every night with a bottle of water! I even drink it in my sleep! Today I will go to book store and get Sticky Blood By Kay Thakery! I also have PV(POLYCYTHEMIA VERA) Avery rare blood disease that usually affects men in their 60's! I diagnosed myself 2 years b4 I went to my Hemotologist! I make too many RBC's , Hi hemoglobin and Platelets and me hi WBC's! About only 65 Thousand people in USA HAVE IT! They call my blood SLUDGE It's so thick! What is Sojourns! I thank you for all your help and Mary is Phenominal as you are too! I am newly diagnosed to this disease and completely overwhelmed with it all! No one, family, friends, & Doctors just don't get it! In order to be accepted I put on a HAPPY FACE to all! The weakness and fatigue is Wat gets to me! I lost my leg this past January and in July had a stomach blockage and again my doctor just made too kite if him after me practically begging him to help me! Wen I arrived at hospital, they tuk one look at me and was tubed immediately! I was asked Y I waited and told them my doc told me to wait till Minday! I had one more day to live before my intestines died! That was stomach surgery #6! After that surgery I havnt gained my strength bak! In 2 weeks I list 22 pounds! I've lost 8 more pounds since! They weight loss affected my prosthetic leg and need another new leg, but due to insurance must wait til January! After my leg amputation I was in REHAB 4 2 months! Most people are ther minimum of 4 months! I was determined to be me again fast! B4 my belly surf. I was walking about 5-10 blocks and started running up and down my block! I never ran b4, but did it because I can! I have many HONORARY GRANDKIDS & love to play and run after them! I had a son and at age 24 he passed away in a hunting accident! These kids r my whole world and they're the only ones that truly make me SMILE! They're unassuming and love without being judged! My sons anniversary of his passing is Dec 6th! It will b 9 years! I tell u this because this time of year is very difficult for me! I'm not sure if my sadness held my symptoms! I know my pain is real, but it may b magnified by my sadness! The pain at night is bad! I don't sleep well at all! I am very greatful for this site! It's a lifesaver for me to b able to vent and get responses drone those that truly understand! Thank You for all you do!!!
One more thing my memory has become a real concern for me! I've told no one yet about it, but it's getting very bad! Sometimes there are thing that I've done that I have absolutely no memory of it! Is that part of APS? I do recall reading something about that! Shud I tell my doctor about my Memory problems? I'm so very afraid to voice this because then it becomes too real! That in scared about! As far as my weakness & FATIGUE r concerned I'm thinking of going bak to rehab again to get my strength bak and be me again! I don't want to b anyone's burden and way too independent to admit to anything that will slow me down! This has and do you think it will improve? Sorry for the length of this, but this site is my only haven for help! GODSPEED!!!
Autoimmune diseases have a best friend in the body: inflammation. Inflammation causes fatigue and invariably ramps up autoimmune issues. And autoimmune issues ramp up inflammation. Its a horrid closed circle. Take a close look at your diet, and consider seeing an allergist for skin tests to see if you are eating something you are quasi-allergic to.
I accidentally discovered I was gluten sensitive in 2004. After going gluten free, all my (previously) positive APS blood work numbers dived into what one hematologist called "boring" levels! (In fact, said hematologist has tried to convince me that I no longer have APS -- if I ever did -- and should discontinue warfarin. I'm not buying it. As far as I'm concerned, warfarin is my best friend!)
My daughter discovered, after several months of issues, that she has an egg allergy. A trip to the gastro specialist was time-consuming and not informative. She then went to the allergist, had a series of scratch tests, got a provisional diagnosis, returned a week later for a confirmation repeat test, was diagnosed with an egg allergy, went egg free. And that was that! No more problems.
Fast, cheap, effective! I don't know if mine and my daughter's story has any relevance to yours, but you might run the food allergy idea by your docs and see what they think.
I almost did last night. I was sobbing in pain, and I am someone with a high pain threshold. But today it seems to have eased off, after 3 days of pain.
Awe thanks! My issues are medicine allergies and the environment! The inflammation part explains a lot! It's very kind of u to respond! It helps me so very much! I just want to be bak to myself again! It's been since July wen I had emergency life saving tummy surgery! Maybe that triggered this! Do u think it cud have? I'm in bed with pain and badly fatigued! I just sleep! Does this go away wen u get settled into right dose of Coumadin! I only was DX'd 3 weeks ago and still juggling my dosed of meds! I started with giving myself shots of Lovenox, Plavix, & 10 mg of Coumadin! Now just off Lovenox! I thank u again for your greatly appreciated input!
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