Prevalence of Severe deep leg pain / ... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Prevalence of Severe deep leg pain / bone pain.


I have APS and have been suffering from sever bone deep pain in my legs at night, not every night but frequently. The pain seems to start in the hip and spreads thru the thigh, to the knee and all the way to my ankle and foot. I was concerned about the possibility of bone infarcts. My pcp is generally great but she doesn't like to do testing if it the outcome would not change treatment. Meaning if I am having bone infarcts what can she do im already taking blood thinners. This pain is server and almost throming I use a heating pad but generally end up getting out of bed an quietly dealing with this terrible pain being carefull not to wake anyone in my house. This pain only happens when im sleeping it will continue for up to two or 3 hours after getting up. Does anybody else have this kind of pain? Ir know what it is? It also effects my upper arms elbow and shoulders. Any idea's on what could be going on?

I appreciate any information, even if its just-me to I have that pain dont know y but I do. Tha k you

22 Replies

I wonder if you read my answer to your question yesterday?

You need a Specialist (who takes patients like you with APS) not an ordinary Rheumatologist or Hematologist. They are rare but you have to look for that doctor!

Best wishes from Kerstin in Stockholm

SoulRebel-APS in reply to Lure2

Im trying to find one but they are not prevalent in the US especally when I live in southeastern New Mexico. As it is I already have to drive 7 hours and then wait several hours to see my hemotoligist. I have to stay overnight as the long trips have gotten so hard on me both mentally and physically. I can't afford to just fly or jump n a car and drive 12 or more hours one way to see a dr. I just do not have that kind of $$. We need more expert's willing to see patient's thru face time. To many of us are left out am need with no way to get the help we need.


On top of of course having a detailed assessment with your Hughes Syndrome/APS specialist, you must as a priority test your vitamin D, B12 and Thyroid, plus if possible your levels of magnesium as any of these being low can cause extra pain. MaryF

SoulRebel-APS in reply to MaryF

I take vitiman b12 and folic acid daily for my homosestene levels. My thyroid test fine but im nit sure about vitamin d. I will have to ask for that one. Thank you

I'm having very similar issues. I didn't say anything to my PCP. I thought he would think I was a hypochondriac. But some nights I'm in so much pain, I just toss and turn all night. I can't find a position that doesn't hurt. It's very frustrating. It has caused me to be very depressed. I'm sorry you're in a similar situation.

Im sorry you are going thrru this pain. Bext ti the APS Headaches its by farvthe worst pain I have on regular basis. Do u have lupus? Are u taking steroids. I have read if case studies where some with aps and lupus was having this leg pain and it turned out that she hadbhad several bone infarcts, aks necrosis. I do not take steriods. Also I had never considered necrosis of the bones as didn't think about the blod flow that goes on inside your bones and joints. I know its not sciatica. I get that sometimes but this is very different. Please bring it up with your APS dr. Let me know what the outcome is. Good iuck. I hope u get better soon!

Soul Rebel

Plz try to let it get you down. I know it feels like u just keep getting new problems added on top of your existing problems. I might try using a heating pad on low and put it on the part that is hurting the most, for me it is from hip to knee so I lay out heating pad on that area. It helps some and sometimes all we need is to take the edge off that pain. Good luck.

This could be other than your APS as above. You don't say which side is affected or both. Is it associated with cramp? I have changed to an adjustable bed with a memory foam mattress which has helped although I don't suffer as much pain as you do. I was also advised to sleep on my left side and surprisingly this also gives me a better night.

Hope things are resolved soon.

Hello SoulR,

I too get this pain and really thought I was going crazy. I would describe it as deep bone pain in my long bones. Not in the muscles or connective tissue or joints. Also, it usually starts when I raise legs in some way, in other words, after being load bearing,but hen go to non load bearing.

Would you say your is the same? It is horrible pain and can keep you from sleeping or wake you up.


SoulRebel-APS in reply to zzcat

I would say mine is very mucj like urs. It is a horrible pain that I get in either leg, so far not both at same time. I have not been able to connect it to amy type of physical activity. It just starts in the middle of the night while im tryn to sleep. I do have a memory foam bed with a memory foam topper. I have noticed it usually starts in whichever side I am laying on if I been sleeping on left side then left leg will hurt. Not always. Also the heating pad helps some. So plz try that. As with pain medsbit doesn't take the pain away just helps take the edge off. Let me know if u find out what it is. I will do the same.

zzcat in reply to SoulRebel-APS

Yes, that describes it. Not both legs at the same time and normally at night and on side I am laying on.

I asked my Rheumatologist about it and he had never heard of it. He did change one med, an antibiotic that I only take 1x a month for 4 days as he said antibiotics can do that, and yes, it has improved a great deal. This new antibiotic has made the pain less and I'd say minimal.

Btw, I have lupus, RA, Antiphospholipid, renauds, vasculitis and a pancreatic mass.

I will keep you for sure let you know if I learn anything new and please do the same. I am in Florida, USA


Can it possibly be neuropathy in disguise>

It could be but I have neuropathy and this feels different kind of pain. One that wakes me and keeps me up. I have a high pain tolerance but this pain is so bad I have to hold my breath to keep from moaning.

I also have this pain in my left hip and leg. It's a terrible deep pain. APSnotFab wisely wrote about looking at local things first. I have a good bed with a pillow top, plus a memory foam topper. When the pain comes there is nothing to do but get up and try to walk it out. I can only sleep on my left side due to a broken shoulder, which doesn't help. What helps me the most is acupuncture, it happens much less often when I'm getting regular acupuncture.

Getting out of bed can help some but walking doesn't seem to help. I sit with the effected leg mostly stretched out and wait for it to subside. Sorry you to are suffering from this pain. My main concern is the possibility of it being bone strokes.

Osteoarthritis is the demon famous for gnawing on your joints in the middle of the night. I have a friend with a spinal version of arthritis induced calcification. I hope thats not what you have, but if so, some imaging tests could lead to a diagnosis. I totally understand a doctors wish to avoid expensie tests for untreatable conditions, but sometimes having a diagnosis, and getting a grasp on what's happening can lead a patient to a way of managing the condition. Managing does not equal curing; but managing can equal a return to a normal life.

Tammylola2012 in reply to GinaD

Have had a terrible bout with my left knee after last clot incident. Thought it was related to clots but continued to get worse even free clots disappeared. Was diagnosed severely deficient Vitamin D during the same time. I now have early osteoarthritis in my left knee and it hurts like the dickens. Ortho said main cause was deficiency in vitamin D which causes softeningof the bones (especially weight bearing joints). So now I also get to add this to my evergrowing list of things that are wrong with me right now. However I agree with the osteo comment from Gina D.

Are you by chance taking any stating: zocor/simvastatin?

No, I am not. Thankfully I do not, at this time anyway taking a statin drug. Good question though as the often cause a lot of keg pain and forbsome reason the dr.'s never consider it to be a culprit in keg pain. I think they think it really rare, but unfortunately it is not rare. Thank you


I had dreadful bone pain esp in the long bones ie arms legs. Found out I was very deficient in vit d. Started a 2 month vit d programme and pain went.

Yes I would say the pain is pretty close to mine, its definitely severe pain deep like in the bones. Mine almost always starts when I am sleeping but will continue for an hour or two after waking. I do fined putting heatinf pad one worst leg and change backban forth all night. If my left side is hurting worse I lay on right side an out heating pad usually 1 big enough to go ftom hip to knees. Then when rght side hurting to bad I roll over and put pad on that side. It helps some with the pain but not a lot. Takes edge off. Note alway use pad on low or a low medium so it doesnt burn u. I also use obe that shuts off in two hours. Hoe that helps. I am sorry u are going thru this to.

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