Hi, is it common for EM affected people to have no burning anywhere but a lot of muscle pains?
My girlfriend has very recently been affected with EM( she was diagnosed with EM about 3 weeks ago and the symptoms had been there for 2 months) and she has muscle cramps(she describes it as feeling the muscle sprains everywhere in the leg), her feet become warm and pink especially in the night. The muscle pains disappear when she takes one Ultracet( Tramadol Hydrochloride and Acetaminophen Tablets) in the morning and one in the night.
I've one more question. Can a wet cloth be tied to the feet when there's pain? I've read at a few places that dipping the feet in cold water results in aggravating the condition. But the doctor himself had suggested her to tie a wet cloth around her feet. Is that okay?
I have had EM since last october with many years prior seeing it come on with inflammed feet.
I have just realised that the mycoplasma bacteria they found in me causes EM, Fibromyalgia etc. In 60% of cases found by a doctor in nuclear mediicne in California, and my homeopathic doctor suspects it is my case.
I am now doing a self administered hydrogen peroxide treatment that is working. I will be severa more months doing this but it is truly a life saver and I suggest you look into it.
It is a semi natural method as the h2o2 food grade only, several drops per day diluted in distilled water and drunken on a very empty stomach breaks down to water and oxygen when it encounters germs in the blood stream. This kills then and invigorates you. The white bood cells love oxygen. This is improving my immune system in leaps and bounds.
Many heavy drugs will give you short term releif but will weaken further your immune system allowing dangerous germs to get out of control. Most doctors do not know this as I am researching the cutting edge instituts, Gerson, Mayo clinic etc.
I just wanted to let you know there are times when my EM causes what I call pre cramp cramping. It stays in that pre cramp cramp for hours and is bad enough without becoming full blown spasms. If I continue to attempt to walk or stay in heated situation it can turn into full on cramp but I have only been stupid enough to let that happen twice. That was only because I would have been left laying in the street had I not continued. Now I know to just avoid getting into that kind of situation in the first place. The cramping is quite common wit EM .
I put a wet towel on my burning feet almost every day and have done so for a long time. I have had no problems. Sitting in a recliner with the wet towel is the only thing that stops my feet from burning once they start.
Pat in NH/US
Tyler said:
I've one more question. Can a wet cloth be tied to the feet when there's pain? I've read at a few places that dipping the feet in cold water results in aggravating the condition. But the doctor himself had suggested her to tie a wet cloth around her feet. Is that okay?
Hello everyone, I have not checked in for quite awhile because my overall health has deteriorated so much.. don't want to bring others down with my despair...
I have many , many, health problems besides the EM and have Medicaid which apparently entitles you to see the most unhelpful, dismissive, patronizing, and disinterested Drs in the state of CT. I also applied for disability over one and a half years ago, and am waiting to hear decision on my appeal-( denied first time).
I would participate on discussion of genital issues, sciatica- I have several damaged lower discs which I think contribute to my vulvodyia pain which is constant. Also have nerve pain radiating down both legs and become totally disabled with severe back pain on an intermittent basis plus arthritis noted in back now. I asked a neurosurgeon whether my disc damage could be causing neuropathy which is then triggering the EM- he said disc spinal problems do not cause neurapathy only possibly nerve irritation- I don't know if this is a semantical issue- a gyno who specializes in vulvodynia said lumbar disc issues can trigger vulvodynia- Newly, I have nagging deep penetrating pain down my arms . Also have interstitial cystitis , and many serious digestive problems. I am starting to believe it is possibly related to gastric motility issues as a result of autonomic neuropathy or possibly a manifestation of sjoegrins disease- which has not shown up on bloodwork but would explain most if not all of my problems(over 50 percent of people with sjoegrins it does not show up in bloodwork- In cat scan- My lower small bowel wall has now thickened in a couple of segments where before "stasis" was noted . I have intermittent severe pain in upper right flank which I believe is related to bilary valve disfunction and also chronic severe indigestion/nausea/gerd related to a poorly functioning pyloric valve. My amylase is always elevated and my liver enzymes have come down but were very elevated for a sustained period-All of this I have had to figure out on my own, as always. Although my EM symptoms have progressively grown worse- (I have it constantly in my hands and feet and occasionally in my face)- it seems to be the least of my problems at this point. Many more symptoms occurring way too many to describe here, and the word that best describes my life journey now is" harrowing". The Drs. are only interested in treated symptoms like chronic pain with heavy narcotics which I cannot tolerate. Without diagnosing underlying causes; there is no protocol, prognosis , or effective management plan to avoid an acute phase,(these problems are most definitely progressive in my case.
My apologies for going on way too long, but I am currently without a support system and it is helpful from time to time to vent and reach others who can relate. I am sincerely wishing you all better health and peace.
I can relate to so much of what you’re going through, my heart goes out to you .My story is as follows. I diagnosed myself with EM a year and half ago. It was confirmed by the Mayo Clinic, and Dr. Jay Cohen, San Diego soon after. Since then I have been diagnosed with Small Fiber Neuropathy, and Fibromyalgia. SFN is a very common component of EM and Fibro. I have numerous other conditions that I have learnt are related to these three main conditions. Interstitial cystitis, hypoglycemic, something I called phantom pain that I now know is call spontaneous pain, etc. Muscle pains, feet- hands –face and genital burning and constant muscle spasms has had me house bound and bed bound about 50% of the time. I tried many of the common drugs used by EM patients, sometimes unable to tell the difference between the side effects and my actual ailments. From some of the comments I have read I suspect others are in the same boat I am in but just don’t know it. I have recently been on a coarse of prednisone which has done wonders for me. Which suggest that there is probably and autoimmune inflammatory process going on. I am currently trying to find a doctor who will give me IVIG (intravenous immunoglobulin) which some Fibro patient find helpful. Has anyone else in this group been diagnosed with Fibromyalgia or Small Fiber Neuropathy? Amyone tried IVIG?
Thanks,
Fixme
Leah said:
Hello everyone, I have not checked in for quite awhile because my overall health has deteriorated so much.. don't want to bring others down with my despair...
I have many , many, health problems besides the EM and have Medicaid which apparently entitles you to see the most unhelpful, dismissive, patronizing, and disinterested Drs in the state of CT. I also applied for disability over one and a half years ago, and am waiting to hear decision on my appeal-( denied first time).
I would participate on discussion of genital issues, sciatica- I have several damaged lower discs which I think contribute to my vulvodyia pain which is constant. Also have nerve pain radiating down both legs and become totally disabled with severe back pain on an intermittent basis plus arthritis noted in back now. I asked a neurosurgeon whether my disc damage could be causing neuropathy which is then triggering the EM- he said disc spinal problems do not cause neurapathy only possibly nerve irritation- I don't know if this is a semantical issue- a gyno who specializes in vulvodynia said lumbar disc issues can trigger vulvodynia- Newly, I have nagging deep penetrating pain down my arms . Also have interstitial cystitis , and many serious digestive problems. I am starting to believe it is possibly related to gastric motility issues as a result of autonomic neuropathy or possibly a manifestation of sjoegrins disease- which has not shown up on bloodwork but would explain most if not all of my problems(over 50 percent of people with sjoegrins it does not show up in bloodwork- In cat scan- My lower small bowel wall has now thickened in a couple of segments where before "stasis" was noted . I have intermittent severe pain in upper right flank which I believe is related to bilary valve disfunction and also chronic severe indigestion/nausea/gerd related to a poorly functioning pyloric valve. My amylase is always elevated and my liver enzymes have come down but were very elevated for a sustained period-All of this I have had to figure out on my own, as always. Although my EM symptoms have progressively grown worse- (I have it constantly in my hands and feet and occasionally in my face)- it seems to be the least of my problems at this point. Many more symptoms occurring way too many to describe here, and the word that best describes my life journey now is" harrowing". The Drs. are only interested in treated symptoms like chronic pain with heavy narcotics which I cannot tolerate. Without diagnosing underlying causes; there is no protocol, prognosis , or effective management plan to avoid an acute phase,(these problems are most definitely progressive in my case.
My apologies for going on way too long, but I am currently without a support system and it is helpful from time to time to vent and reach others who can relate. I am sincerely wishing you all better health and peace.
Hi Dekel,hope this gets to you- thank you so much for the words of encouragement and support. That's all for now, all the very best to you as well, Leah
dkel9307 said:
Hi Fixme
Thanks for your post.
I have small fiber neuropathy, but have not had an IVIG. My neourologist along the way has mentioned IVIG as a possibility and knows of some success with the treatment. I think, like all treatments for EM, it works for some and not for others. If you do have it, I sincerely hope it works for you - please let us know.
I am so sorry Leah You have to suffer so as well as so many other of you here. It is hard enough just having EM but to have all of those other conditions on top of it just makes it so difficult to bear. I find sometimes the doctors just find it to be too much. It sounds ridiculous because what are you supposed to do??? Not tell them ever thing? How are you soused to know what is important and what is not? I am sure it is all important and all a piece of the puzzle. I once had a neurologist tell me exactly that.....That is too much! That is what he said. He said lets just concentrate on the migraines . apparently implying ignoring the numbness in my hands, feet and arms as well as the strange smells and tastes I get. The strange water droplet sensations I get in random places on my body. Along with intermittent extreme blood pressure spikes where I normally have very good blood pressure . Oh and testing done showing slow digestion by eating radioactive eggs. He said that was just too much. Oh we must not forget the burning of EM!!!!!
These are just the neurologic issues I had that I brought to a neurologist. I never shared my many other non obviously neurological symptoms. It can be frustrating to say the least. It isn't as if he said today we look into the migraines and we will look further into everything else as we continue treatment. He just left it at ....that's too much!... Needless to say I don't see him any more! HA!
I hope you all are having an ok day today. Thank you for listening to my rambling ;)
Hi Alina, very good to hear from you- we talked before about the burning tongue thing-(which I still feel is related to a poor digestion issue), I get it when my digestion is at its worst- you mentioned the slow digestion thing-havn't had that test but I am thinking I have that too, and other weird things- disfunction of oddi sphincter muscle which is a bilary tubal thing carrying bile and pancreatic fluids from pancreas and liver and might involve stenosis in that area- again a dismotility issue- get terrible pain there-but whatever they focus on seems tangental to me and not addressing the issue of diagnosing underlying disease processes- and they do not take time to connect the dots-they only want to treat symptoms and all of that stress is on us to unravel all of this and keep track of symptoms when we are so sick and suffering!!! I think automonic neuropathy is a cause of many strange and terrifying symptoms- which can be a result of either undiagnosed lyme and /or autimmune disease. I would not be so quick to assume that the other issues you have are all non neurological- I believe I, and you, and probaly most of the folks on this website, are being literally ravaged by disease processes that have not been fully untangled- I often have waves of malaise that pass over me when I feel that the my life force is just draining away- my ck blood level is very elevated as is my lactate dehydrogenase- these tests measure muscle and cell damage
yes you are so right- they do feel it is too much! I get that too,they should try living with it!!!!!!! I also have really weird stuff happening in terms of stange mental health symptoms- clearly not just depression and anxiety as a result of chronic pain and poor quality of life- "episodes" for want of a better wor-d it is too scary to try to describe these occurances for me at this time- I am certain my brain is being impacted by these disease processes but this is very hard to convey in a concrete way to medical folks- I now have incidents related to perceptual stuff like looking at things upclose etc-so frightening.... at some point I will need to request an mri brainscan to assess damage, but I am not quite ready for that you are so not rambling- i would much rather hear your stuff then listen to my own self go on and on.... it is comforting to know I am not alone, although I am sorry you are suffering too hope you are having an ok day too- I stuggle moment to moment and hour to hour- I try to stay in moment and feel peace in that you take care too, and thanks Leah
Good point, but I avoid meds like the plague for just that reason, side effects. I take very little meds-only my thyroid, off on and gerd meds and some supplements.
wishing you a good day,
Leah
dkel9307 said:
Hi Leah
You are doing a great job of handling all your challenges.
Re the "episodes" you mention, I understand that these can be caused by many medications...and mixtures of medications...so please hold onto that thought and perhaps discuss with your doctor.
I am new to to EM so I have no idea if it’s related or not. I’m going to watch the replies you get as well. Now that I have addressed that I will tell you of my weird experiences with a disorder called “benign fasciculation syndrome” or BFS. It also goes by BCFS for benign CRAMP fasciculation syndrome. I have had BCFS for ABOUT 15 years. A fasciculation is a “twitch”. Twitches are muscle spasms and can vary in strength and length. At times I have twitches all over my body and they drive me crazy. It took me 3 years before I finally got a Dx. That was frustrating too because I found the disorder on the internet after a neurologist said she had no idea what was wrong with me. I thought I was losing my mind! The peripheral nerves in people with BFS are hyper excited all the time. That is why we twitch. To say we “twitch” doesn’t really explain much. There are SO many kinds of twitches. I have all of the twitches posted below…going on 24/7.
quick short ones. Reminds me of popcorn.
Repeatative ones. These are in the same spot and can last for days or weeks.
Long and slow ones. I get these in my hamstrings. They are very painful.
Ones that quiver. I feel like a piece of bacon. I have no other way to describe it. It’s in one muscle, usually my hamstrings.
Itty bitty ones. These feel like a tickle or a bug crawling on me.
Some times I feel possessed. Like something is inside me kicking to get out and you an physically see the muscles jumping.
Also my twitches become spasms after a while. Especially when I’m asleep. My nerves stay hyper excited even when my muscles relax. That’s when I get the most terrible charley horses! I can be jolted awake with one massive cramp…and get 2 or 3 more trying to work it out! For many years I got very little sleep. A typical night I would get an hour or two at a time (on a good night).
I have tried anti epileptic meds, anti depressants, muscle relaxants…everything! I finally found 2 things that work for me.
Zolpedim (Ambien)
Tramadol (Ultram)
I still get jolted from a deep sleep but I can get about 4-6 hours before a nasty cramp wakes me.
Now…within the past year or so I wake to burning feet! I can go to bed with ice cold feet but sometime in the night it switches from cold to hot!
I've one more question. Can a wet cloth be tied to the feet when there's pain? I've read at a few places that dipping the feet in cold water results in aggravating the condition. But the doctor himself had suggested her to tie a wet cloth around her feet. Is that okay?
I know for a while we went a little off road as tends to happen bit. I am usually the first to send us veering off!!!
I just wanted to address our question a little better. I think EM can cause other issues other than just burning. Then again there are people here that have other conditions separate from EM that most of us don't have and most likely never will bringing many other symptoms into the mix. separating them like sheep herders into an EM flock can be quite a challenge! I am not a doctor and truth be told I am not so sure they even know 100% Exactly what symptoms are EM and which are part of a separate condition.
I kind of go by the rule of......if it is effected by temperature change, ambient temps or through activity / emotions causing body temperature elevation it is probably related to EM especially when it responds to cooling too. note...PROBABLY :)
I can get cramps in my feet or back pain just from temperature elevation and they get better with cooling. even though they don't burn. In my own opinion it is related to EM .
I know it isn't a nice clear answer but it is a way to think about her symptoms as they come. Are they here because of temperature and activity? Do they improve with cooling? It is important to note if they are not. I know some people can have EM so long and just get so comfortable with it ( I know poor choice of words!)
They just start blaming Everything on EM. It is still important to take note of why these symptoms occur so you can bring that information to your doctor. It helps to bring the whole picture.... These things happen because of this and this makes it better while these things happen because of that and that makes it better. Instead of showing up with just a blanket these things happen.
I hope you both are doing well and again...thank you for taking such good care of her :)
Thanks a lot Patricia for taking your time out to give such a detailed answer. I’m really sorry for the pain that you’re in and my heart goes out for you.
But, in my girlfriends case she doesn’t have any twitches or other symptoms associated with BCFS.
Hi Alina, she has cramps/spasms in her legs(feet especially) that get worse if she walks. The effect of temperature on her pain is one thing we haven’t yet figured out properly because the symptoms started showing just 2 months ago and since then it has been summer here in India. She stays in AC from morning until evening in the office, but that doesn’t stop her from getting the pain. She constantly has pain in her feet(under her toes and heels) which intensifies late in the evening and there’s a lot of pain right after she wakes up. But it’s never the burning pain that you guys are experiencing. A couple of times when she woke up in the night(not due to pain) she noticed her feet were very warm. She takes a couple of ultracet tablets, one in the morning and one in the night. She has no trouble sleeping. But there’s a lot of pain in her feet.
Her GP though is confident that it is EM, a rheumatologist that she’d seen recently said it’s not EM, though he couldn’t give a reason as to why he thought so. He asked her to come back after a couple of weeks if the pain persists. I’m wondering if the rheumatologist knows EM well enough, as she’d undergone a battery of tests ruling out other diseases
And about veering the discussion a little off the road- no problem. I’m interested in all the discussion that goes on in this community. I really appreciate that each member in this community is so helpful to each other.
Hi Tyler. I know this might sound kind of strange but when I refer to warmth It could mean any temperature over 60 degrees for me. A few have a thresh hold around me 60-65 where I can be and not have problems usually. I can still get them . I am much better off between 60 and 63. Then as you mentioned this happening to your girlfriend and is a reason for my continued suspicion of EM is at night all bets are off and it doesn't seem there is a cold cold enough to keep it at bay.
So when I refer to warmth it doesn't actually refer to what normal people think of as warmth it just means an increase in temperature above whatever that persons trigger thresh hold happens to be . I don't know how to explain it any other way. Most people call my 65 degrees cool when that is definitely to warm for me and sets off symptoms!
The cramping she has in her feet is all to familiar. It happens all of the time in mine and can happen with or without actual burning sensation and is brought on more by walking and not walking much! Maybe you can try putting a fan up to her feet and see if that helps. Even though I have air-conditioning I still have to use the fan for spot treatment on body parts that flare up. Keeping her feet elevated , fan on them , and limit activity and see if that makes a difference. If so then you are probably leaning towards EM. Her feet do turn Red ,Swell and are warm to the touch which is one of the criteria's but is this a response to temperature change??? That is the question we are looking for. Remember to look at it with new eyes.
I don't want to be the temperature I have to be to control my symptoms so you might have to look into a little cooler temps than you would have originally thought of.
Did I understand this right? You did ask your Rheumatologist what it is that makes he think it isn't EM?If you did and He had no answer that isn't very convincing . Although There is still a chance it could be something else I wouldn't base that on this particular opinion. How does your Rheumatologist know about EM? How did your GP find out about it? or did they just know? Did you bring either one of them printouts of the basics of EM so They have a better understanding of not only what it is but of its treatment options? I know a majority of doctors all over the world have never heard of EM if they have they usually know very little if anything about it. It isn't uncommon to have to educate your doctors about EM then work with them to find treatment that helps.