I am on this site and read about all the pain everybody have. I have only a little pain from Artros (according to my Rheumatologist) in my thumbs. I do exercises. Never take painkillers.
Can it be because I am primary APS and with no other autoimmun illnesses? I feel sorry for you who have so much pain. Someone else without much pain and with APS?
Kerstin in Stockholm
My biggest problem was I did a very physical job that put my joints in the wrong place doing the wrong things for many years plus I taught Karate for over 15 years and in the early years fitness training was doing long term ill to my joints. Once I got involved in bio mechanics it was to late damage was done.
I keep being told that I have a very high pain threshold and with Karate did learn to control pain for a time by pushing it out. But Pain is there for a reason and should not be ignored.
If the gout kicks in then it comes with a vengeance and pails the arthritic pain in comparison as a mild ache 
But I try to keep a Positive Mental Attitude there is always someone worse?
Be Well
I don't know, Kerstin. I have a lot of pain in my joints and sometimes in the connective tissue. I have mild Lupus as well as APS and a lot of arthritis. I guess we're all different! I also have the thumb trouble.. my APS specialist said pain in the thumbs is ALWAYS down to age!!!!
Hi Minnime and thank you for your answer!
Perhaps you have pain because you have other problems than APS. My Rheumatologist (Specialist of APS) says it is typical thumb-artros which is the most common one. Artros is newly recognized as a Rheumatological illness in Sweden. Many people have artros at different places and it is very common. Exercise is good they say. I have special movements for the hands and fingers to do every day. You should try that also perhaps.
Kerstin
You are clearly lucky, plus you do take charge of your health with all the walking and careful attention to diet, I try an do the same and hope it helps. MaryF xx
Yes, I guess I am just lucky!
I also believe you are very correct when you speak of having control of your Ferritin and D-vitamin-levels. Also B12 and Thyroid-panel. If they are too low that can give pain to our body.
Probably it has to do with APS as Tim, (on this site) had read that patients with APS had low Ferritin (iron) levels. I visited my Rheumatologist last week and she said that my D-vit level was very good.
Thank you for all you do Mary!
Kerstin
I must find out if I have low iron levels! My other blood disorder Polycythemia makes me have very hi iron stores! Weird I am! My Polycythemia affects the other pars of the blood! So I'm covers with bad blood! Have the double whammy!!!
You have to have a discussion with a Doctor SPECIALIZED in APS. If you talk to a Hematologist about your blood-disorders he or she must also know APS really well.
My Specialists know APS both and they can refer me to other Specialists. That is the way it goes here in Stockholm. But i know I am very lucky to live here and have finally found these two fantastic Doctors. Also read what Mary says about suplements and bloodtests!! This illness never goes away but it is treatable.
Kerstin
APS alone did not cause me to have chronic pain. What is causing my pain is the damage that was done to the veins in my right leg from an extensive DVT. Before the DVT I never had any pain in this leg. Tonight my pain is so bad my usual painkillers are having no effect on it. I doubled up on my pain killers and it was like taking a sugar pill. I might go to the ER tomorrow. My leg feels swollen and it is in more pain than usual. It was fine when I walked around yesterday; and then the pain came last night, and then today, and tonight as well. I hope it is not another DVT. I also have constant pain in the left side of my chest, but it is manageable. It is a level 2.
The key is to remain proactive about managing your INR so that you do not have any clots in the future that will cause damage to your body. If I knew how much the clots in my leg were going to impact my quality of life, I would have taken blood thinners long before my accident. The problem is I never knew I had APS. And even if they did find the antibodies in my blood, they still would have denied me anticoagulants because I didn't have a medical event at that point in time. You are very fortunate to have not suffered with any extensive DVT's. That is where the pain comes from. I hope this helps to answer your question.
J
Hi sirclotsalot !
I think your are so right. I have only have small clots and no extensive DVT. It is very unfair! But I know how important it is, as you say, to be proactive in managing the INR (Warfarin) within the therapeutic level to avoid further clots.
You have helped me to understand today why I am so lucky. I have not had any really big events and DVTs. But even the small ones make damage to your body in the long run. I know that. But no pain so far.
You have done as far as you could. So many of us here know what it is to fight Doctors who do not know etc etc.
Thank you for your most valuable answer!
Kerstin
My story is similar, I realize this is an old post, but have often wondered about this too. I haven't any pain except when I sleep wrong on my pillow or forget to have caffeine. Interesting🤔
I am also happy that I don't have to use painkillers! We can be grateful of that Kerstin! I don't know how I could manage with painkillers because my INR goes from the target up or down, out of balance with even paracetamol. Some pains in joints and muscles come and goes but not anything serious at least at the moment.
When I was 8 I fell and cracked my knee cap. I limped from them on and, so, wore out the hip joint on the opposite leg. In the years before my hip replacement, I did PT and worked on "fixing" my bad gait. The hip pain was obviously caused by advanced osteoarthritis -- the MRIs were quite clear that there was very little cartilage left. But I did notice that the level of pain did fluctuate with my INR -- the higher the INR, the lower the pain. I was trying then to put off the replacement until I was older as, replacements (then) were not predicted to last more then 10 years AND I am a hiker and I didn't want to give up hiking at age 60 (which would have been my age had I replaced the hip when I was 48 -- which is when the osteo in town wanted to do it.)
But I could never convince anyone that this causal connection between high INR and less pain was real. I kept charts, I documented stuff -- but no doc ever believed me. To cope with the pain and kick that surgery can as far down the road as I could I took naprosyn, used trisalysilate Isp?) creams and did everything my physical therapist suggested. However, I was unable to walk perfectly as the hip damage prevented me from accomplishing the perfect walk. Accupuncture and chiropractic worked a little bit.
Now I have a new hip (2013) and I follow all the post hip suggestions -- and haven't had a minute's discomfort or pain from my hip since. Hooray!
But now that knee -- the one I broke when I was a kid? Now that I am finally able to walk "perfectly," my opposite knee is objecting. Loudly. So, I'm back to exercises and topical salcilate cream (which is more effective on the knee then had been on the hip') There is absolutely no correlation between level of knee pain and INR. None.
So -- my theory? Osteoarthritis engenders inflammation. And that inflammation does not stay confined -- it effects neighboring tissue. In my hip's case, the neighboring tissue was the neural highway called the spinal cord and the sciatic nerve. Higher INR meant less "added on" inflammation caused by my APS antibodies jumping on inflamed blood values. Which meant, lower INR, more inflammation, more pain.
But my knee doesn't have much there. I have noticed an occasional cramping type pain in the muscle just above and lateral from the knee. The same mechanism? Or coincidence? ??????
I hope my long post gives you some insight into your condition. Another suggestion from my physical therapist which did work -- though hard to follow at times? Ice for 5 -10 minutes every 4 hours. As my therapist described it: "Ice is an anti-inflammatory, just like asperin and other NSAIDS. The side effects from the NSAIDS include bleeding, heart problems and death. The side effects of ice? A cold wet knee."
Oh Gina! I think you are absolutely right. The knee has nothing to do with the spinal cord.
I have read that someone here was suggested to put ice on the leg (by a Doctor). That would help with the inflammation but not with a DVT or clot of course.
I have Artros in my hands but Artros is not caused by inflammation but you have to practice a lot to get better. But you are not supposed to practice with your hip hurting like hell I guess. Still Artros is now recognized as an Rheumatological illness.
Thank you Gina. You should write a book about your documentations. I mean it. At least write it down and save it to the World.
We have a lot to learn and understand but you have helped me here a lot today. Do you have to take painkiller for your knee?
I don't like to take any painkillers, as they can alter my INR. When I do, it's for my back. For the most part the pain I can deal with and tolerate.
Thank you Christopher for your answer about pain killer!
Yes I am also afraid if I had to take those drugs as it would alter my INR.
Good if you can handle the pain. We learn a lot on this site. At least I do.
Kerstin
I also notice that my leg pain feels better when my INR is higher. More circulation to the damaged veins in my leg definitely helps with my pain level.
Yes,
Hope you get a Doctor who watch over you like a hawk.
Keep well and thanks for answering!
Kerstin
Hi Kerstin.
I think I must be one of the unlucky ones with APS that suffers pain most days. Usually in the form of headaches, but I do get pain in other areas too eg, the top left hand side of my right foot. It is made a little easier when my INR is at 3 or above, but I do take amitriptyline daily, I have to use a device called a Gamacore, which I use three times a day, and I have to take some other form of pain relief regularly - usually paracetamol (which doesn't really work for me) or co-codamol.
I've had my current headache since last Tuesday, and have put it down to a dip in INR from 3 to 2.1. I have another INR booked for Tuesday, so hopefully will get a better result.
Despite my pain I'm not one to really moan. I just stick a smile on and get on with things. Having a six year old I'm kept really busy, but it gives me a reason to keep going. I'm lucky to be alive, and have learnt that as well as looking after myself, I'm so lucky to be able to do all I do. I think it's all about finding a healthy balance, something I do struggle with, as I never like to say 'no'!
The way I look at it is 'if i can feel pain, then I'm still alive'!
Sending hugs across the water xx
Hi and thank you for your answer!
Sorry about your pain but you are so positive. I am not a doctor as you know, but there has been reported about metatarsal fractures (non-traumatic !) in the foot. Perhaps you can look into it.
I had pain in my right foot and my Hematologist sent me to a Ortopedic dr (?) about "Morbus" -somehting. Now I have got "inserts" in my shoes and it is gone. Perhaps you should look in to that too. Just a thought.
Give your 6-year old man (?) a hugh from me please!
Kerstin
I don't suffer from pain at all.... I was diagnosed earlier this year (aged 36) after a bilateral PE and multiple clots in December. I used to suffer from migraines and severe calf pain (usually running related) but dont any longer so generally feel better now that i am on medication I take Rivaroxaban and continue to exercise... In fact I exercise more as I believe that being fit is what kept me alive (the doctors were taken aback by the extent of clotting shown by the CT scan as I was generally ok apart from some slight breathing difficulties). The only challenges i'm facing at the moment is heavy periods (which I will adjust to) and the low energy levels I have as a result. I am being tested for anaemia but once i'm back on track through supplements i'll try to manage this through diet. I do count myself lucky but also think that being positive and staying fit and healthy helps.
Yes, Good!
Hope you have got an APS-Specialist all the same. I am not a doctor but I know that the Rivaroxaban may not be ok for all of us with APS. And those heavy periods may (I do not say that it is a fact) have a connection to your anticoagulationdrug. I think I have heard that from others on the new oral drugs. You can look into it though. I hope that they will soon find a drug that will prevent the antibodies not to attack healty tissues.
Hope you stay on this site. We learn a lot from eachother. I have been here several years and I am from Sweden and feel fine as long as I keep my INR (I am on Warfarin and selftest) in the right level ( around 3.8 in INR). Your active life will keep your bloodpressure down which is important with APS.
Most of us have found that an active life (if possible) make us feel much better. A healthy, variated diet is important also to feel ok.
Thank you for telling us how well you feel. Usually happens when the blood is thinned properly.
Kerstin in Stockholm
Hi Kerstin! It's 2AM & I'm still up with the flulike aches and pains all over my body! I was DX'd with Fibromyalgia many years ago in the 90's! I wonder if I do have Fibromyalgia or was it always just APS? I've had APS most of my life and was recently DX'd! I'm not sure of anything any of my doctors have told me!!! It's disheartening not to trust hardly any of ur docs! What can I do about the pain! Wen I tell my docs they look at me like I have 2 heads! This will continue till about 4AM! Does anyone else have thes pains and Does anyone go to pain management Docs???
Sometimes Fibro is misdiagnosed from doctors who do not know about APS very well. When you find this SPECIALIST (who you MUST find to be ok) he may take more bloodsamples. Thyroidea and Sjogrens and APS and ev Lupus go hand in hand and sometimes also APS is misdiagnosed as MS. Listen to Mary what shes says.
I have been on this site for several years and I have heard so many members with pain. Sometimes the answer is to have a Specialist-doctor who knows what to look for and to get anticoagulation and the right drug. We are all different but we all have too thick blood and often get thromboses and DVTs and microembolies and clots because of our sticky blood.
Kerstin
Thx Kerstin! I ordered Sticky Blood bu Kay Thackray! She has 2 books out and I got both! Thx so much for all ur time and selfless energy to this cause! You are so very kind and understanding as is Mary and the others! I'm sooooooo lucky to have found Y'all!!! GODSPEED!!! I pray for all of us each and every night!!!
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