My problem started around 12 months ago, it started with just an aching/heavy feeling in my lower leg region. It then spread to the feet and upper leg & lower back. It feels to be a deep muscular pain also accompanied by stiffness and fatigue. Also included in this is my feet feel incredibly hot especially when wearing shoes AND THEY WERENT RED and sweat and are instantly relieved by taking shoes off, they only really feel hot to me if I ask my girlfriend to feel my feet when they are burning me she tells me they feel cold or normal. I do get the muscle pain in the arms/hands/shoulder/neck area but nothing compared to my legs & feet.
I had my GP give me all the blood tests he could think that it could be, from memory some of these included, CBC, Autoimmune, Inflammatory level, ANA, b12, vitD, etc, and all came back normal and they told me I most likely had fibromyalgia.
I have tried Multivitamins, Magnesium, Vitamin C, D, B12, B complex and others but to no avail.
Also tried Chiropractic, Massage, Acupunture, Dry Needling, Physio, Stretching etc all helped slightly but could not take the pain away.
I tried amitriptyline and it helped somewhat but the side effects were too much
Other symptoms include depression, night sweats, restlessness, weight loss, acne , ganglion cysts , fatigue, diahorrea or loose stools, irritability, sleep disturbances, low libido, grinding teeth at night, rapid heartbeat, concentration & mood issues. One thing I do not suffer is headaches that it seems other fibromyalgia.
About 4 months ago my condition worsened with regards to my lower back the pain is intense whilst sitting.I had had an xray and came back normal. Also around this time my burning feet evolved into what my current doctor calls erythromelalgia, my feet become incredibly hot when NOT wearing shoes and get very red, only thing that helps is submersing in hot water. They still get hot when wearing shoes but they dont have that red erythromelagia flare . This has made it difficult for me to go outside in the sun as it triggers it as does exercise. It is important to note that this is different to the burning feet I get when wearing shoes, my feet do not get red then they get very sweaty and fatigued and are relieved by taking the shoes off, its almost like it’s the compression of the shoes.
Does anyone else here have anything similar to me? if so what did you find as the cause and treatment
I've had EM for over 4 years but chronic widespread pain (fibromyalgia) for about 2 years. My fibro symptoms started not long after a car accident where I suffered whiplash. I hear this is a common starter for Fibro... Have you had an injury that started your symptoms..?? I also had reflex sympathetic dystophy about 9 years ago.!
I'm similar, based on your symptoms listed, and I had the same negative tests, and more. This year (after 19 yrs of EM!) I learned I have a hereditary disorder of connective tissue which may be ehlers-danlos. It's causing Mast Cell Activation and orthostatic intolerance that could be causing my EM. It's unclear whether the HDCT itself could be causing the EM due to the effect of hypermobility on blood vessels and nerve damage also related to hypermobility. Has that kind of stuff been considered? Do you have any hypermobility signs (common in EDS and HDCT's)? For info go to ednf.org, dinet.org, and these below.
Mast Cell Activation Syndrome http://www.mastocytosis.ca/signs.htm
Hypermobility http://www.dynakids.org/Documents/hypermobility.pdf
Your problem isn't very likely to be this, but if you're like me you can look for help for many years and would like a few suggestions from other EMer's experiences. I tested negative to Fabry and Porphyria and had a lip biopsy for Sjogren's before seeking a geneticist who specializes in EDS/HDCT's for evaluation. It was my last hope and turned out to be the one. Fortunately, my HDCT is a relatively mild presentation other than pain being pretty severe, especially the EM. But the non life-threatening symptoms are hard to live with so I'm so glad I sought evaluation and am doing better now.
Good luck to you.
Hi Matty.
What side effects did you get with Amitryptyline? I am taking these as the pain was too much to bear, and they seem to help. I still get some burning sensations mainly at night and have to hand my feet out of bed. My doctor is going to refer me to a neurologist. I was wondering also if you had had tests for MS. I know the symptoms are similar aren't they? When I wasn't taking Amitryptyline I was getting stabbing pains in my feet and toes, dragging, heavy sensations in my lower legs, burning etc. It was really awful. Almost unbearable. I didn't know what to do with myself. I'm just grateful that Amitryptline has helped a bit. I don't know yet what I've got, whether it's MS or Fibro or Eryth.....They're nasty symptoms whatevery the cause. I also get shock like sensations in my head on one side if I bend forward. I've always had bad eyesight and I can make one of my eyes go off to one side by itself, with the other one remaining looking ahead. For years I've suffered from cluster type headaches with pain in the eye and in the socket. I've also had short periods of bladder emptying problems when under stress. So I don't know if I have MS or Erythromelalgia yet.
It's a shame if you can't take Amitryptyline, as I've found some relief with this. Not perfect, but better.
Perhaps a different dose might help. I take 30mg a day, in the evening and then if my feet still hurt some Ibuprofen so I can get some sleep!
no specific injury comes to mind, i was working 70 hours a week at the time and had been for around a year
lauraflora1 said:
I've had EM for over 4 years but chronic widespread pain (fibromyalgia) for about 2 years. My fibro symptoms started not long after a car accident where I suffered whiplash. I hear this is a common starter for Fibro... Have you had an injury that started your symptoms..?? I also had reflex sympathetic dystophy about 9 years ago.!
im double jointed in the thumbs and fingers and other small parts around the body....wow...what kind of treatment do you receive
Kentuckian said:
I'm similar, based on your symptoms listed, and I had the same negative tests, and more. This year (after 19 yrs of EM!) I learned I have a hereditary disorder of connective tissue which may be ehlers-danlos. It's causing Mast Cell Activation and orthostatic intolerance that could be causing my EM. It's unclear whether the HDCT itself could be causing the EM due to the effect of hypermobility on blood vessels and nerve damage also related to hypermobility. Has that kind of stuff been considered? Do you have any hypermobility signs (common in EDS and HDCT's)? For info go to ednf.org, dinet.org, and these below.
Mast Cell Activation Syndrome http://www.mastocytosis.ca/signs.htm
Hypermobility http://www.dynakids.org/Documents/hypermobility.pdf
Your problem isn't very likely to be this, but if you're like me you can look for help for many years and would like a few suggestions from other EMer's experiences. I tested negative to Fabry and Porphyria and had a lip biopsy for Sjogren's before seeking a geneticist who specializes in EDS/HDCT's for evaluation. It was my last hope and turned out to be the one. Fortunately, my HDCT is a relatively mild presentation other than pain being pretty severe, especially the EM. But the non life-threatening symptoms are hard to live with so I'm so glad I sought evaluation and am doing better now.
Good luck to you.
drowsiness, drop of libido mainly i was on 30mg at night and it knocked me out like a light.
Linda123 said:
Hi Matty.
What side effects did you get with Amitryptyline? I am taking these as the pain was too much to bear, and they seem to help. I still get some burning sensations mainly at night and have to hand my feet out of bed. My doctor is going to refer me to a neurologist. I was wondering also if you had had tests for MS. I know the symptoms are similar aren't they? When I wasn't taking Amitryptyline I was getting stabbing pains in my feet and toes, dragging, heavy sensations in my lower legs, burning etc. It was really awful. Almost unbearable. I didn't know what to do with myself. I'm just grateful that Amitryptline has helped a bit. I don't know yet what I've got, whether it's MS or Fibro or Eryth.....They're nasty symptoms whatevery the cause. I also get shock like sensations in my head on one side if I bend forward. I've always had bad eyesight and I can make one of my eyes go off to one side by itself, with the other one remaining looking ahead. For years I've suffered from cluster type headaches with pain in the eye and in the socket. I've also had short periods of bladder emptying problems when under stress. So I don't know if I have MS or Erythromelalgia yet.
It's a shame if you can't take Amitryptyline, as I've found some relief with this. Not perfect, but better.
Perhaps a different dose might help. I take 30mg a day, in the evening and then if my feet still hurt some Ibuprofen so I can get some sleep!
Matty,
The biggest change to treatment has been that I'm now on meds for mast cell activation and it's definitely helped with the flushing, burning, fatigue and GI symptoms. Pain is better too, but that may be because I went off Simvastatin. I don't know if the MCAS caused my EM or just contributed to it by making me so heat sensitive and causing flushing, which triggers episodes, but I don't doubt that my EM is caused by my connective tissue disorder in some way. The MCAS treatment "starter treatment", which I'm on, is an H1 blocker twice per day, and H2 blocker twice her day and oral generic sodium Gastrocrom (Rx). My H1 is Zyrtec and my H2 is Zantac 150. Another H1 mast cell stabilizer, Ketotifen, is also being researched now for tx of Fibromyalgia. It's a good one but not available in the US yet. It can be used instead of gastrocrom too.
Other than that, treatment is just now more focused on joint support and strengthening (gently!), arch support (!), and avoiding MCAS triggers and issues common in HDCT's. My fibro is still very much present and causes grief, but at least I know where it comes from. I must have great arch support in my shoes (Birkenstocks), wear Silver Ring Splints on my fingers (which I love them) and avoid chemicals and foods that trigger me. I lot of meds trigger it, so I avoid them.
So far, I've found 11 other people online who have diagnosed EM and also an HDCT. For some their HDCT is diagnosed as Ehlers-Danlos hypermobility type or classic type, but for others it's an unknown HDCT like mine. Usually a good geneticist is the way to get evaluated but there are a few great rheumatologists who can also diagnose it, but those are hard to find. Most rheums focus on the autoimmune disorders and don't recognize the HDCT's.
matty277 said:
im double jointed in the thumbs and fingers and other small parts around the body....wow...what kind of treatment do you receive
Kentuckian said:
What are you symptoms exatcly?
Kentuckian said:
Matty,
The biggest change to treatment has been that I'm now on meds for mast cell activation and it's definitely helped with the flushing, burning, fatigue and GI symptoms. Pain is better too, but that may be because I went off Simvastatin. I don't know if the MCAS caused my EM or just contributed to it by making me so heat sensitive and causing flushing, which triggers episodes, but I don't doubt that my EM is caused by my connective tissue disorder in some way. The MCAS treatment "starter treatment", which I'm on, is an H1 blocker twice per day, and H2 blocker twice her day and oral generic sodium Gastrocrom (Rx). My H1 is Zyrtec and my H2 is Zantac 150. Another H1 mast cell stabilizer, Ketotifen, is also being researched now for tx of Fibromyalgia. It's a good one but not available in the US yet. It can be used instead of gastrocrom too.
Other than that, treatment is just now more focused on joint support and strengthening (gently!), arch support (!), and avoiding MCAS triggers and issues common in HDCT's. My fibro is still very much present and causes grief, but at least I know where it comes from. I must have great arch support in my shoes (Birkenstocks), wear Silver Ring Splints on my fingers (which I love them) and avoid chemicals and foods that trigger me. I lot of meds trigger it, so I avoid them.
So far, I've found 11 other people online who have diagnosed EM and also an HDCT. For some their HDCT is diagnosed as Ehlers-Danlos hypermobility type or classic type, but for others it's an unknown HDCT like mine. Usually a good geneticist is the way to get evaluated but there are a few great rheumatologists who can also diagnose it, but those are hard to find. Most rheums focus on the autoimmune disorders and don't recognize the HDCT's.
matty277 said:im double jointed in the thumbs and fingers and other small parts around the body....wow...what kind of treatment do you receive
Kentuckian said:
Matty,
It's hard for me to separate out what are the MCAS symptoms, EM and the HDCT completely, but I'll tell you enough about my MCAS symptoms that maybe it will answer the question. It's especially hard for me to know which of my pain problems (other than EM) are due, all or in part, to MCAS.
Almost everything I ate seemed to make me start flushing in the face, ears, neck and/or feel hot all over.It was thought (wrongly) to be hot flashes. I was constantly hot & miserable and in a lot of pain from the EM.
Had IBS symptoms much more often, especially diahrrea after eating.And I had frequent problems with nausea and had to get an Rx for a PRN anti-nausea med. I had a few spells of unexplained vomiting that docs at first tried to say was food poisoning for a virus, but when it kept happening it was obvously not that. I had history of stomach acid problems and was on a PPI already. It didn't seem to be an acid problem this time either.
My Rhinitis and cough were worse and I had spells of mild wheezing. But the allergist didn't think the problem was traditional (type 1) allergy. Allergist thought my lung issue, rhinitis, eye dryness, itchy skin was all due to dryness that made me very sensitive to irritants. Then found that some of my eye and skin issues were due to type 4 hypersensitivity to certain chemicals. I tested positive.
I had a history of past experiences (years before) of reacting very strangely to inhaled chemicals.I reacted to a tile mortar by getting instant, severe bronchitis that really alarmed my GP. For weeks I was sick with that and my breathing was shallow and it felt like my torso was stinging. It felt like I'd imagine it'd feel like to be poisoned. It was so bizarre that I was afraid to tell my doctors, afraid they wouldn't believe me. Very abnormal feeling. Also had past episode of reacting to a new flexible dryer vent hose installation by severe burning in my throat and eyes and we had to throw out the vent hose and put in a metal one. I also, for years, could not spend time in bookstores without getting diahrrea. Some other stores did the same. Never knew what I was reacting to in them. In some libraries my eyes and nose would run like crazy and I'd have to just leave. Yet, tests for traditional dust, mold, etc., types of allergies only caused delayed skin reactions so I was told it wasn't allergy (type 1). Probably all those reactions were MCAS reactions to chemicals, and dust or mold
Not everyone with MCAS has the exact same set of symptoms, but they're pretty similar. Some just have a milder case than others and different food, chemical or other environmental triggers. I belong to a fb MCAD group to try to learn more. I suspect I've had MCAS many years and it just got more severe this past year.
I hope that helps. If you meant the HDCT/EDS symptoms, you can friend me and private mail me and I'll send info on that.
matty277 said:
What are you symptoms exatcly?
Kentuckian said:
sounds similar to my symptomss. i wsd diagnosed with fibromyalgia but the EM diagnose came later when i start having the night sweats and other symptoms. my doctor ran a lab test called SPEP and was later diagnosed with MGUS. come find out, my EM wad a secondary diagnose to the MGUS. You may want to have your doctor run this test on you. now that we know what was causing these same symptoms that you mentioned, we have better controll of my EM.
Char, If you don't mind sharing, what treatment changes were made for your " Monoclonal Gammopathy of Undetermined Signifigance" that helped your EM? I have a persistant polyclonal gammopathy (and fibromyalgia) but my doc doesn't know the cause or whether or not it matters. I've wondered if I should have a consult with a hematologist about it, but my rheum and GP don't think it's necessary. I know someone with MGUS who turned out to have it due to Sjogren's Syndrome. But I've read that there are a lot of different disorders that can cause MGUS. Can't find as much info on the polyclonal type though.