Hi all. This may have nothing to do with EM, but I thought it couldn't hurt to ask.
I often wake up with sharp pain (not burning EM pain - just sharp pain) on the outer side of one or both ankles, just in front of the bony protrusion of the ankle joint (not in the joint itself). I figure it must be in a tendon or ligament, but pressing around the area, I am unable to locate the source. The pain goes away after 5-20 minutes once I've hung my foot off the bed or held it in the air. My suspicion is that it has to do with pressure on my heel when I sleep on my back (putting a pillow under my calves helps sometimes).
Anyway, I just thought I'd ask if any of you have had a similar experience. I have no history of arthritis or this pain in any other area. This did, however, begin around the same as my EM symptoms, which are worst in my toes. I asked my doc about this last year and he was clueless.
It sounds like the pain I get if I ever sit on the floor or on the bed with legs forward. I have had it as long as I have had EM but was putting it down to arthritis, which I do have. The pain goes as soon as I start moving about. I think you are probably right about the cause being the pressure on your heels.
I have something similar, though I feel the pain in the heels themselves rather than the ankles. It's not EM burning, it's a sharp pain that comes on after I've been in bed for about 4-5 hours. Putting a pillow under my calves seems to do the trick, so I think the cause is the pressure on my heels.
The ankle pain is due to Em. It has progressed upwards to my hamstrings too. Tendons, ligaments seem to constrict - tighten- cause sharp pain... small nerve fibers putting pressure . Its worse after being in bed or motionless for few hours. Feels like achilles tendon is going to snap. very very painful. Makes it hard to walk properly. Once you start to move - maybe 20 mins it tends to ease and go. Another bizarre symptom to add to list.
LibbyK, my experience with EM is that is definitely progressive in some people. Mine is progressive- I now have it all over my body and internally, eyes, face.... everywhere in the space of 1 year..As you regulars EM ers know i am completely disabled with it. What a wicked wicked cruel relentless disease this is!
Sodium channel blockers seem to be helping some of us ... lidocaine/mexiletine links are on site.
Thanks for your responses, guys. This has been a mystery for me, and it has come and gone with no predictable pattern over the last few years, but when it's bad, it's BAD. I'm on the search for a new doctor now that I have coverage thanks to the ACA, so maybe, maybe I can find someone who know something... anything. We'll see.
Hi Libbyk. I too have that pain after sleeping or even just sitting for too long. It hurts like crazy for the first 10-20 minutes when I walk. It’s as if my tendon back there is too short or something. Mine just started in the last 6 months. I also have pain in my hands like they are broken! Only when I sleep. It hurts so bad to move them but after a few minutes if movement they get better. They actually won’t move no matter how hard I try ( pain aside). I can wiggle them a little at a time till they finally start working. This has been going on the last 2 years every single night. It never fails! I thought it may be my Autoimmune but I am on some pretty heavy meds for that and I have seen improvement on my other autoimmune symptoms just not the pain from sleeping. Maybe it is part of the EM. Thank you for bringing this up. I never would of thought of the relation because as you said it doesn’t burn! Take care
Alina.
Hi everyone, I get the joint pain described in my ankles, knees, and hips all during the day when I get up for about 30 minutes. My hands hurt so bad at night I cannot move them. Is it the EM?
Hi dazsa. I posted in January about my hands that feel just as you described. interestingly they have stopped hurting at night for the most part. it still happens sometimes but not nightly like it had for about 2 years. The pain wakes me and my husband says I whimper in my sleep because of it. I am not sure if it is EM related or not but I would not be surprised as for some of us it seems to do a lot more than just burn. My ankle pain on the back side of my ankle when I try to walk after resting had subsided as well. My symptoms seem to fluctuate. Just when I think I am making progress because one aspect of it is better something else starts or the old problem comes back. I still get terrible pain and stiffness in my lower back and I have had xrays but they can't find a good reason for the pain. I feel for you. it is impossible to get any kind of rest between the burning and the broken hands feeling that happens when trying to sleep.
I hope yours just gets better as mine has...at least for now. May I ask how long this has been happening ?
Thanks for the reply. My wife notes that I whimper in the middle of the night often from the pain as well. My hand pain in the night has been happening for about 3 years. My hands do not swell as badly as they used to, but the pain is just as severe. I have shown my hands to neurologists and rheumatologists and they would simply look at my hands and make no real comments. I have no joint swelling and the EMG tests have been normal.My Quantitative sensory testing has been very poor for my feet through my knees. Every time I get up from sitting or laying down it takes a least 30 minutes for the pain to be manageable to shuffle along.
I met with a lawyer today about disability but I am very discouraged...I don't know how I can go back to work, but I don't know how I can afford not to try. I will loose my medical and life insurance immediately and it might take up to a year to get disability coming in.
I know your pain as far as the work dilemma too. I was fortunate to have long term disability insurance through my company and my first 6 months off my health insurance was covered 100 percent by my company. I struggled to maintain working for the first year and a half but just couldn't do it any more. It just was no longer a choice. I have been awarded long term disability so I receive payment from them and am in the process of applying for SS disability. I went on the health exchange and qualified for health insurance for 200 $ a month. It is tight but we are making it.
It makes a world of difference not working. I stay in my air conditioned house and limit my activity and that has helped minimize the pain considerably. I d most of my shopping online because I can only spend 10-15 minutes walking in a store before I can't stand it any more. Being in less pain has changed my life! I know I am pretty much a prisoner in my own home but it is so worth it. I am no longer in screaming crying pain all day.
Do you qualify to keep your insurance via COBRA? Do you live in the US?
I know the OBAMA Care deal has helped me get affordable health insurance until I can get it through SS.
I hope you can find a way to stop working. It helps immensely .
My joints don't swell unless they are burning. When my fingers feel broken in the night they look completely normal. They just hurt so bad and I can't move them. I have yet to find a doctor that can tell me why. My EMG was normal too but my Quantitive sensory testing was abnormal in my feet and up to about my knees as well.
I know what you mean by shuffle along that is for sure! It is so difficult to walk you just have to kind of slide you feet. I am lucky to have hard wood floors!
I see that you have seen a rheumatologist. Do they think you have some sort of auto immune? My Rheumatologist thinks I have some sort because what have going on is deffinately systemic but the blood tests are inconclusive. Some times I wonder though if it is all EM. I suppose any think that effects your neuro and vascular system can effect just about any part of your body. I know some others would disagree and assume other symptoms must be caused by something else but I am not so sure. I think there are different types of EM some more localized and some more systemic. Just a theory.
I hope you find something that helps you get better so you can keep working but if not I hope you find a way to stay home. It helps sooooooo much!
I wish I could try the Meloxicam but I am on Coumadin and an anti inflammatory is a big no no. I am pushing it taking a trial of aspirin and have been informed by the doctors it is not the safest thing to do. I just wanted to see if it helped to see if a myeloproliferative disorder was the cause and if it was I would stop the aspirin and start the treatment for the myeloproliferative disorder in turn making me no longer require the Coumadin!!!!
If only that was the case. I don't think it is for me. I think if aspirin was going to help it would help right away to my understanding. I know most people are afraid to have a myeloproliferative disorder but I would be thrilled if that was the case because I already have the most dangerous symptoms of one which is the frequent blood clots. I have been tested up the ying yang and no one can figure out why. At this point I would be happy to have a known cause for any of this so we could work on fixing it!
Thank you for sharing. I hope others can give it a try and hopefully get a little relief from it.
Can I just chime in to say that improvement on aspirin doesn’t have to mean a lurking myeloproliferative disorder. I have been tested to the nth degree at a top London hospital including undergoing a bone biopsy and don’t have any kind of MPD. I know of others who have been tested because of the aspirin improvement and are also in the clear.
Nel
Thanks to all who have contributed...I can tolerate some NSAIDs but with little relief. I think I have some Meloxicam in the cabinet from one of my doctors before. I don't know...I am so discouraged about disability, no insurance if I try to go on disability, the stress of trying to force myself physically to go back to work. I know many of you deal with much greater trials than I do. Thanks for the input. dazsa
the joint pain you describe is like an arthritic pain. Can accompany swelling but as alina states it frequently does not. I tend to get this arthritic pain 'out of blue'. It just attacks for days/weeks at a time then goes for a while before it randomly strikes again. Rest rest rest- thats all i can advise. Being tired makes us more vunerable to this arthritic thing . Its not documented as a commonly known symptom but for those of us with more sistemtic EM or progressed EM it becomes one of the most distressing disabling sypmtoms along with the burning, hot searing, swelling. I know , others including myself sit and cry with the pain. The cruel part of this is that heat would help to ease- the one thing we have to avoid. I have noticed a common thread amongst sufferers in that this arthritic pain in EM often precludes the co existence of Raynaulds Syndrome. It attacks the digits but the pain is leaning more to the arthritic type of pain.
The ankle pain you describe is , according to my research, is undoubtedly due to Em. This pain has progressed upwards to my hamstrings too. Tendons, ligaments - even muscle constricts - tightens- causing that acute sharp pain... The swelling during flares and the hyperexcitability of small nerve fibers also puts pressure . Its worse after being in bed or motionless for few hours. Feels like achilles tendon is going to snap. very very painful. Makes it hard to walk properly. You have to shuffle. Once you start to move - maybe 20 mins plus it can ease and eventually go. More bizarre symptoms to add to list.
EM does not show up in any tests - couple of ways to give working hypothesis of EM is the thermo regulation or a skin biopsy, which would show heat intolerance (Chronic urticaria). Going to upload some stuff on this for everyone.
No hard fast or fixed rule in EM. The most bizarre ideas, treatments and practices may help one of us and thats a blessing.
I have tried NSaids myself - Ibuprofen, Naxproxen, Aspirin - which i believe helps with swelling. Personally I favour mefenemic acid.
In terms of joint pain- Magnesuim spray is something I also favour plus Epsom salt baths (cool ones of course).
I have suggested massage in past but i must reiterate on its benefits. I have been having lymphatic massage for 4 months now. I assure you it is painless- like a feather... I couldnt withstand otherwise. Massage has noticably reduced my swollen legs. I now find my legs do not remain in a constant state of elephantitis. Massage has also helped greatly with the constricted tendon/shortening of ligament- muscle.Despite being pretty much disabled I am seeing greater flexibility and less cramping. I do recommend MLD Manual lymphatic drainage . Costs around £60 an hour in UK. You will need intensive course - weekly for 6 weeks then once every 2-3 weeks depending on severity of EM.
Also helps to boost immune system and de-stress
A win win therapy to put in your polypharmecutical toolbag
I attach research on massage in EM for your perusal
I am no expert David but I was given to understand that if the bone marrow biopsy was clear I could not be brewing a platelet disorder. Is that not so?
Nel
dkel9307 said:
That's an important point, Nel. I've had a bone marrow biosy as well and it showed nothing. I get my bloods tested every 2 years, just in case. So, my summary is:
1. If people respond to aspirin, they are in the catergory of possible-probable myeloproliferative disease underpinning EM
2. This DOES NOT mean anyone responding to aspirin has a MD
3. Often, if the MD is there, it appears after the EM is diagnosed (some research, Mayo Clinic I think but not sure, showed an average of 2.5 years after EM diagnosed)
4. Safe option is tio have regular (say, every 2-3 months) full blood counts (CBCs).
You stated possibly those with EM/Raynaud's are more likely to also have the accompanied arthritic pain. I know every one with EM doesn't have the opposite with Raynaud's/ pernio mix . I am curious if there is a real link there. I may start a new post with this but can I ask everyone if you also have Raynaud's do you have arthritic pain or no? For those of you without Raynaud's type symptoms do you get arthritic pain? I myself have the full EM with Raynaud's/ Pernio/chiliblains / levido reticularis mix and I have terrible arthritic pain at any time of day in any temperature as well as the pain and stiffness with sleep or inactivity. I am always trying to put the little pieces of the puzzle together. I don't know if there is something there but I am curious.
Thanks!
Alina mads said:
Dear Dazsa,
the joint pain you describe is like an arthritic pain. Can accompany swelling but as alina states it frequently does not. I tend to get this arthritic pain 'out of blue'. It just attacks for days/weeks at a time then goes for a while before it randomly strikes again. Rest rest rest- thats all i can advise. Being tired makes us more vunerable to this arthritic thing . Its not documented as a commonly known symptom but for those of us with more sistemtic EM or progressed EM it becomes one of the most distressing disabling sypmtoms along with the burning, hot searing, swelling. I know , others including myself sit and cry with the pain. The cruel part of this is that heat would help to ease- the one thing we have to avoid. I have noticed a common thread amongst sufferers in that this arthritic pain in EM often precludes the co existence of Raynaulds Syndrome. It attacks the digits but the pain is leaning more to the arthritic type of pain.
The ankle pain you describe is , according to my research, is undoubtedly due to Em. This pain has progressed upwards to my hamstrings too. Tendons, ligaments - even muscle constricts - tightens- causing that acute sharp pain... The swelling during flares and the hyperexcitability of small nerve fibers also puts pressure . Its worse after being in bed or motionless for few hours. Feels like achilles tendon is going to snap. very very painful. Makes it hard to walk properly. You have to shuffle. Once you start to move - maybe 20 mins plus it can ease and eventually go. More bizarre symptoms to add to list.
EM does not show up in any tests - couple of ways to give working hypothesis of EM is the thermo regulation or a skin biopsy, which would show heat intolerance (Chronic urticaria). Going to upload some stuff on this for everyone.
Yes Alina- thats a great post. If you have Raynauds do you have arthritic type pain? We cant prove cause and effect, but we might see a correlation. This is very interesting area. Ill get some research for us. Love this post idea Alina x