Severe Pain caused by the damage and clots I had because of APS

I was just wondering if others deal with severe pain from DVTS and blood clots that damaged your body. I have chronic venus insufficiency and peripheral artery disease. I get severe pains in my lower back, hips groin, and knee, all the way to my toes. I am miserable most days. I take pain meds, but my dr and I are still working on what will help me best. Some appointments my drs act like I am speaking a foreign language because they don't seem to understand the pain I'm in. My aps dr today when I asked him to raise one of my medications 5mg, he went through my x rays and started look8ng at my arthritis, saying it wasn't that bad. Then after my appointment I realized that he thought I was asking because of my arthritis. It's like he hasn't seen me for the last 7 years. It's so frustrating that I have to convince drs that I'm really in pain.

14 Replies

  • I sympathize with you. It's like you have to take charge and make them listen. What kind of blood thinner are you on and is it working properly? APS is not a very well known disease and a lot of doctors don't know how to treat it properly. I hope you feel better and somehow alleviate your pain.

  • I'm so lucky to even get pain meds, because I do not have any X-rays for the doctors to see my pain. I just have chronic blood clots in my right leg that cause me a lot of pain when not medicated. I have a hard time sleeping and walking. On a bad day, the meds keep me from wanting to strangle someone. On a good they, the meds help me move around and get out of the house. Chronic Venous Insufficiency is a very disabling condition for some people. Peripheral artery disease can be helped with surgery. They can fix arteries in the legs, because they do not have valves like the veins do. Veins are hard to repair, and most surgical options other than removing the old clots and stenting are ineffective. There is a procedure they can do to open up damaged veins, but they cannot repair leaking valves.

    I need that particular surgery, but my insurance will not cover it. I was going to tell you that one of the best medications for vascular/nerve pain is Methadone. I take it because my pain doctor says it is a good drug for that purpose. I also take a few Norco 10's every day. I'm on 40-50 mgs of pain meds per day (a low dose) but I keep it that way on purpose. A lot of doctors are cutting their patients down to 100 milligrams of morphine equivalent per day due to the new CDC guidelines concerning pain meds. I don't want to ever go over 100 mgs. I have days where 50 mgs is like trying to put out a fire with a garden hose, but some pain meds are better than none. If you want more help too, you can try and find a pain management doctor. Most will not try any other procedures on you because you're at a high risk for blood clots, and because you're on blood thinners. My doc said he can't do much for me because my medical issues are too complex. At least he listens to me and treats my pain. I hope you feel better soon.


  • That exactly how I feel. I can't sit, stand, or walk much before I start having alot of pain. The pain meds help me get around a bit. My wife works and I have kids who need me. Otherwise I could lay in bed all day. I have trouble sleeping at night due to pain. I am a side sleeper and with my legs that wakes me up in extreme pain. I try laying on back but always end up on my sides. I am a disabled vet, so I don't have to pay for insuranceand use the VA hospitals. There is no APS specialist at the VA, or even around near me for that matter. So I have to make due with who I have. After all these years, I'm just getting good tired of feeling this way all the time and having to explain how I feel constantly, and people looking at me like I'm crazy.

  • As you live in California I really hope it could be possible to find a Doctor who knows this illness well, that is a Specialist. To find the right Doctor who understands what you tell him and who is ready to give you the right treatment is the most important issue for us!.

    You have Lupus Anticoagulant like me and I do not know if you have the other two antibodies also positive like I have.

    It is very common with this illness that we have micro-clots or microembolies and they are not seen on a Scan of today most of them. The Doctors do not understand this but they do harm to our body all the same even if they are small. A Specialist knows.

    When I read what you write I doubt your Doctor is a Specialist. What anticoagulation are you on?

    Best wishes from Kerstiin in Stockholm

  • Yea there isn't a specialist near me. I have to use the VA hospitals, it isn't like I can just see any dr I want. My anticoagulant clinic pharmasist seems to know more about the illness than my own dr. I'm on Warfarin. They won't put me on anything else. They said my range is to be between 2-3 and won't change that either.

  • im sure, after reading these posts, that the leg damage I have due to the DVTs i had in the 80s is no where near as extensive as your. After all! I'm still a hiker and 5 mile a day walker.

    But way back when, when the leg damage was new, I did a lot of leg muscle building exercise and those helped a lot.

    Im not trying to compare my condition with yours-your sounds waaaay worse then mine ---just trying to share a therapy that worked for me.


  • I have tried the walking more and what not and it wasn't getting any better, the pain was to much to bear, and when I did try to be active I was bed ridden for days. My leg swells up bad, and I'd I use compression stockings my thigh and groin swell up. So I am on a lose lose end with that.

  • I can tell you as I have also Lupus Anticoagulant and APS like you that often the clots or microembolies are so tiny that they are not seen on a Scan of today. Very few Doctors know of this illness and what it is all about - too thick blood that has to be properly thinned!

    If they can not see the clots or embolies they believe of course that there are no such things and you are just fine. Can you take those LA-test after you have started Warfarin and rely on the result? What did your Specialist say to that?

    If you feel content with an INR between 2.0 - 3.0 I would not be surprised if you get more clots and your symptoms will never end.

    We need an INR over at least 3.0. If I am under an INR of 3.0 I have to take a Fragmin-shot to avoid clots or embolies. So work on that APS-Specialist you have or try to change!


  • They said it has to stay the same 2.0-3.0 because with the latest information in the medical field, that's what the national target range is for anticoagulation. This is from the anticoagulation clinic pharmasist at my hospital. He printed the 12 page report for me to read. So I'm stuck. I feel terrible when I am at 2.4 and below, I feel slightly better at 2.5-2.8, never have been at 3.0 or higher. I told them about what you were saying and he still said no.

  • I feel so sorry for you.

    Yes, the national target range for coagulation is an INR between 2.0 - 3.0 also in Sweden I believe.

    But we are not "ordinary people", we have very thick blood that has to be properly and stable anticoagulated. It is only an APS-Specialist who really know and understand that and that it the Doctor you must find.

    Print out some paper about Antiphospholipidsyndrome or Hughes Syndrome or Sticky Blood and show them.

    Please ask for help to convince them!


  • The only thing I can suggest is that you see a specialist privately and use that info to batter down your current doctor's defences. I have no idea what that will cost you but if you can afford it do so. Also, as Lure suggests, maybe print out some of the information from the Hughes Charity website. If you aren't being properly treated you will continue to feel like crap!

  • I understand what you are saying , I like Kerstin am an APS triple positive primary . I have a total of 27 Dc's all over the state . some i see as needed and others for special testing . since 2009 i have had in access of 125 tests done on me. I have pain all thru my body .I am going to take these messages to my new DC.{ am you are right some just DON"T listen and you have to some what train them if at ALL POSSIBLE . So Kirsten's idea of the Microembolies -- might just be my problem with my neck ,back ,arms ,hands .knee's and feet . -I have DVT'S all the time and i get them in a day or so . This has documentation from many of my specialists .I have 27 Dia. problems most all related to the APS. They label me as an " Extremely Complex Patient " .I have two Dc's that are Pain Dc's and i was getting therapy from one with dry needling and muscle therapy and Pain Care I get shoots " 36 " every two months and on 4 meds , two strong pain killers and actually another Gaba "2400 Mls a day .and then 2 type's of Muscle relaxers .

    Sorry for the delay in replying as my computer power supply burned up on the 13 th of this month and just got it fixed last night !!!! All this is why I am know as MR MURPHY !! what can go wrong can and will with me !!

    Hope things work out for you and i am here if you want to know more

    C & J

  • So good to hear from you Jim!

    A Hug to you and Casey!


  • You to my friend - My specialty Hospital in Leb ,while seeing my Dc. on the 18th to set up for my up coming surgery He tried to up date and also correct my files !! well being me when he did this he got someone else fill and it got incorporated into mine with at least a dozen medical Dia. that aren't mine -One is i am a #3 hemophiliac , along with teeth removed from accident and also toenails removed due to fungus -- skin problems from UN Clean practices. etc . The Bad thing is if i went to hospital or was brought to the ER and was not conscious and they didn't see or understand APS and treated me for the Hemophilia I would be in a deadly situation. not to mention the drugs they listed for these things -and my computer power source went bad and i couldn't get this mess straightened out till this morning and it still is there til they can get someone that can access my records to go over it to to get them things out -- Now my other Hospitals ,I have made aware of this problem and they are nervous that something could happen to me and the results could be fatal. That's why i am their GPA or they refer to me as MR- MURPHY , your know the phraze What can go wrong can and will with me HA HA ..Feet are coming along , just got new hiking boots so breaking in new orthotic's along with new boots . got my narcotic cream back -- that is going to be of great help because they stopped it 2 years ago , wouldn't cover it so it ,and i couldn't afford it . -They originally gave it to me because they didn't want to increase my oral pills because of the stage 3 cirrhosis in liver . so the cream being most all of my narcotic's med's worked well .Surgery is slated for Nov. , hopefully the beginning of the month- I will be held in hospital for 5 days and off my feet for 3 weeks depending on progress with Therapist . and being an 80% risk factor they want to do it sooner if # 1 pain or swelling occurs # 2 stomach pain or tenderness . or other unpleasant things happen !!! HA . I have a lot of catching up to do with this computer , when it went down i lost Passwords , Account info , and lord knows what else ??? Well i guess i will see as i try to access different things . other than that things OK __ OOPS accept for blood has been all over the place -- just tested this morning , no results as of yet , last one on Tues 4.6 {which i love but DC's don't ,to high for them } Friday before 1.9 so been all over. right arm going limp on me and seeing they stopped the Epidural spine injections with Orthopedics- i now am going to see a Neurologist. {don't know when yet or where } to deal with neck , spine ,lower back arms < especially right shoulder ,arm and hands .

    Now i think that is it HA HA :-)

    what do you think --0 thanks for the info ON MICRO'S I WILL TALK TO NURSE TODAY WHEN SHE CALLS ON BLOOD INR --I NEED TO RESEARCH IT MORE . :-)

    Big Hugs to You from Casey and I

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