Hella ajcb bella, Yes,I have some of your symptoms. I think, and I am told, that mine are due to the Restless Leg Syndrome. I do take medication and this has to be taken regularly and daily - it is called Pramipexole. There are different strengths. Other people have different medication. My symptoms majorly affect sleep in that the muscle problems, by their very nature, prevent sleep. The amount of medication seems to have to be precise, though once the level for a person is determined, the level can remain constant for a long time. I hope you soon have a solution for your symptoms, and I empathise with you. Katriona
Thankyou for your replies katriona as I do need so much help and support at the moment. I seem to have 4 doctors that haven’t a clue, me to is meant to be in stockings every day but they make my EM. Worse. So every time my legs flare a thread vein burst somewhere. My legs are a mess. It was the vein specialist who said your autonomatic nerve is unstable and said it need slowing down useing pre- gab or gabapentin yet my rheumatologist said they only a pain killer that have made u gain weight and that two will put pressure on veins. I don’t know what drugs to take or who to listen too. All 4 doctors have got my head baffled all I know when ever I been hit either in hands legs feet they seem to shake jolt twitch jump jerk it’s mad. I did suffer from a few convulsions as growing up so not sure if I already have some sort of seizures going on. It’s so frustrating getting answers. Thankyou for taking time out to reply to me. It means allot . X x
I have had restless leg syndrome since I was in my teens but my myoclonic jerks are sometching else unless I can be persuaded otherwise. I get a stinging sensation, like a sharp jabbing pain, say at my waist and my leg shoots out or forward and can cause me to stumble and once even tipped me off a kitchen chair, or it might emanate upwards from my foot or diagonally from my back They happen when I am overheated and before I was prescribed Clonazepam they were unendurable at night so that I spent hours freezing myself to stop them enough to go to bed again. I get a rash with EM, I presume a heat rash and the jerks seem to have some association with the frantic itching of the rash. They can happen at the same time as restless leg syndrome or on their own. The neurologist just said it’s all neurological.
Hi Nel you are the other lady on here I know haha. I didn’t want to use your name with out your permission. Sorry I haven’t got back to you. My legs alone have never been a issue. Mine is my left arm. But if I have a full attack on legs and heat is present then night time is a nightmare. All day my toes tap. I only notice as family make me aware. I look like a nervous wreck. I am not though. I do know when been pointed out that I twitching I start to panic as self aware then and it becomes worse. The more I try and stop it makes my anxiety worse what makes me heat up and it just becomes worse. I do think I have something else going on my EEG was horrible, it knocked the hell out of me for 2days. I do believe these seizures things are definitely related to heat. “Example” I was 15 ringing my bike at a fast speed to my gymnastic class I became very hot and ended coming of my bike and having some sort of convulsion seizure thing, God only knows x
I hope someone else comes up with their own experience of this. Meanwhile I will do a bit of research.
Thankyou Nel. I do go back for EEG results with neurologist soon, but again he has not heard of my disease so I not sure that any answers will be there x
I believe you have a "Movement Disorder" There are websites and blogs set up for this disorder. I have attached a link which may help you identify your type.
Hi. Yes I also get twitching muscles quite often. But I read that muscle jerks can be a side effect from the medication I take which is Imipramine. I also get what is funnily named Exploding Head syndrome which is a feeling lasting just for a second of a loud bang going off inside my head. Also have tinnitus with what sounds like cicadas noise. This is also a common side effect of high dose Imipramine unfortunately.
I've been having some spasms/shaking on my lower legs (ankles and feet - specifically toes) recently. Starting to take over the counter Magnesium has really helped! I still have spasms (mostly when my toes are really cold...super cold is almost worse than the hot i'm used to) but they're a lot less frequent.
My doctors told me that it's most likely "restless leg syndrome" so they told m to do more walking wich is hard but in the end it'll all more
My mom has restless legs, or perhaps I should call them restless feet. She will wrap up her legs at night to prevent them from moving and also as a kind of tournequet to keep the blood from flowing as freely to the legs.
An MD asked me if I would videotape her feet at night. Stating it would be interesting to see if her feet are moving at night. I had a theory that my mom's feet and toes moving were creating more heat buildup from muscle movement perhaps. After all her feet could be hot and her ankles cool. How can the blood and surface of the skin be more hot, like 101 degrees or so when the core temperature is 98 degrees? How can the feet have a higher temperature than the core temperature. My thought was that muscles flexing back and forth with constant movement was causing heat to buildup from muscle usage. Maybe the muscle twitching was building up heat. It sounds of course to me like a good theory, but it's just my layman theory. Mom's feet are active when she is awake and when she falls into a deep sleep her feet will not be moving at all. And the twitching at times may be in reaction to the pain, but also can be something she is not conscious of and I can ask her if she knows her feet are moving and twitching and she will state she doesn't realize they are.
My mom's EM could have come from many possible causes, but our chief suspect is it's from a drug reaction from Risperdol. When she was getting off Thorozane, a doctor gave her Risperdol and she developed EM or burning foot syndrome. She also had other things that some have said could cause this as well, which seems like a perfect storm of items to possibly blame and can confuse us as to the real cause of her onset of bad symptoms. She was for example suffering from athelete's foot, she went through her change of life. She suffered from mild EM like flares with Xanex earlier in the mid 90s'. She also stubbed one of her toes badly before the onset of the worse symptoms. She was also scratched by a cat when visiting my sister during the trip where the symptoms started to develop. So with fungal infections, ringworm, cat scratches, Risperdol, and a stubbed toe in the mix, we have plenty of things we could blame as a possible cause.
My mom's case however may be quite different than typical cases. She has great blood flow. She has a heart of an 18 years old according to some doctors. She has not responded to many drugs given to EM sufferers, the main drugs being Tramodol and Baby asperin, at least these were given to many supposedly to help reduce flares. My mom in her case had low blood pressure before. Some have stated using blood pressure pills might help. Others have said that Lyrica can help. My mom is on low blood pressure pills, lisinopril and has tried Metropolol, but the Metropolol which should be better than lisinopril was worse for her, and caused feelings of hot blood cruising through her upper torso to happen as well as a tremendously bad pain flare in her feet. My mom takes heavy duty pain medication. Norco and Fetinal (spellling) pain patch 50mg. My mother had tried other lower end pain killers like Vicoden SK and they did not touch the pain. She was taking 75mg pain patch but has had that reduced with flexerol added to the mix a muscle relaxer. Sorry about the pill spelling here, it's late and I"m typing this message quick.
The diagnostics from different doctors may be slightly different. Most admit she has EM or burning foot syndrome, but some of her symptoms at times are talked about as if she has a skin infection. And at times she responds to anti-biotics or at least thinks she does and feels better when taking them which might point out toward a possible skin infection as well. She also has no fungal problems now but had them and had thrush like sores in her mouth and fungas throughout different parts of her body when she was first suffering. Fungal infections may destroy the nerves and cause EM according to some reports. She also was on anti-anxiety or drugs to prevent fear, which may have been prescribed for other things as well which were not known to us and may have been false diagnosis, but that's another story. She was on nerve pills for years before her EM started. So it could be a result of a mixture of pills or side effects form long term use of them. Not necessarily a typical case. She may have jolts of pain, like her toenails feeling like they will be pulled out that wake her up or a flare of pain or a hot flare may wake her up from a sound sleep.
She used ice water immersion to help reduce the pain when she was first suffering. Her feet can look purple and cold after ice water immersion. She of course may not be typical. She doesn't appear to have cold feet or frozen numb feet as some neuropathy people would have, who may have burning and also cold and numb feet. She seems to have very sensitive feet to light touch and usually hot flares and burning swelling feet. She has to have her feet up on pillows most of the time and with a mix of a muscle relaxer in (5mg flexerol, actually a half a pill two or three times a day), her flares went down a little bit, maybe taking 5% off her flare episodes. With the muscle relaxant added to her pain pill regimine, she was able to reduce her pain patch down to 50mg for the three day patch. Note a fentnyl pain patch is a very powerful thing, maybe 40 times more powerful than Morphine. It's so powerful you won't likely start with a patch like that, but it's something that may be added later if other pain pill drugs don't work.
She has tried Cymbalta, which she claims helps her, but my dad and I think Cymbalta affects her brain more than her pain and we'd prefer to have her off it if that was possible. Cymbalta gives her a kind of mania. She takes 30mg per day and used to have two 30mg doses per day which was to much.
She's had all kinds of medications. My father wanted to replace the pain patch with something else and she got some powerful pill (forgot the name, but may be able to look it up). Anyway it's a powerful pill that some have tried, and it did nothing for her and she had to go back on the patch. She also takes Ativan for nerves to calm down and sleep, but I don't know if that's something that is necessary and really helps her burning feet, it may more be something she uses to calm her mind to get some sleep. Sometimes she says she is not sleeping, and claims she just has her head down in pain. Sometimes she prays due to the pain and sometimes it's a kind of crying agony which can be hard on her and of course those around her who care for her.
Doctors may try a number of things. In my mother's case a nerve velocity study was done and she has 50% reduction in nerve velocity whatever that means. In her case it seems EM is the opposite of Neuropathy but some have that disease. A trademark of EM is heat will bring on a flare and cold chilling will help reduce the pain and swelling. Nobody can predict for sure what will help you. . . you may end up seeing more than one doctor and trying a lot of medications. If you're lucky you'll find the cause and find a treatment that helps remove the cause. If you're lucky you'll just have occasional flares. If you're not lucky you will have a more or less continuous flare and be bedridden and have almost no normal life. If you're not lucky you will find little to help you're case.
My mom also responds well to lidocaine cream - over the counter Lanacaine. And she mixes it with Camelle Beckman's French vanella cream, which be buy from a local Halmark store, and also some ACO stores carry that cream. The creams that allow your feet to breath are better than some creams. Zinc cream and a wrap for example tried by a foot doctor built up heat and held it in and caused bad flaring, so we ditched that fix.
My mom's EM doesn't affect her strength or cause muscle wasting, but she may not be as strong from lack of overall physical activity. My mother also reacts badly to foods that are salty or to sweet. Also hot food, that is with a high temperature can affect her feet, so she mixes cold and hot foods when she eats. And I may prepare hot vegitables for example (without any salt or much seasoning) and then chill them and chop them up as well (for her bad teeth issues) and she may have things like cold buttermilk that is chilled frozen and made into a kind of crushed ice like snack for her drink. She chills her elevated feet constantly in a cold room with room or window air conditioners. She can ride as a passenger if her feet are up on the dash next to an AC vent, She has used water chilling in the car as well, but that was messy and a hassle. Having her feet on the dash elevates them as well and the AC helps a lot. Her trips are usually 30 minutes in the car, maybe two 30 minute or less trips to a doctors office once in a great while. She gets home health care, because getting out causes a lot of pain and makes things worse. She will often make and then cancel an appointment with a doctor or dentist, because she can't predict if her next day will be a good day or a very bad painful day.
That's just some info about my mom. All the pain pills may give you the same side effects and dangers that a normal person would have, but people with chronic pain, usually have to put up with the long term hassles and possible side effects from heavy opiate based pain pills. Just because you have bad pain, doesn't mean you will get a free pass on the side effects from pills you're taking.
Some food for thought. We also have a chilling based on air conditioning the entire living room, bedroom and bathroom and hallway. This makes a hostile chilled environment even for her own body, so we have to wrap her in towels and use a heating pad or pads to keep her warm in the upper body and stave off the chilled room. A large box that is configured to channel cold air from an AC unit or from a swamp cooler design might work well and can be augmented with a CHILL PAD that uses ice water like the EB ICE system. These can help and possibly allow local chilling of the feet in a small environment and allow the room to be a little more warm for the other parts of the patients body or for visitors.
Hope this helps some, but remember my mom's might be quite different. Also in my mom's case, the plug for a skin test and needles in her legs for a nerve velocity test caused discomfort even years after the tests she can sometimes feel the results.
My mom can have a localized flare in one part of her foot, for example an area by her toes and this will be hot and another part of her foot can be normal like a normal persons skin temperature would be. For example I've recorded 95 degree temps in a 60 degree room with fans blowing on the foot and another part of the foot was reading 70 degrees for a localized skin temperature. And my arm or hand under the same environmental fan and cool air would read a skin temperature of 70 degrees.
My mom also has higher blood pressure on the side of the pain flare in the same arm as the side where the flare is occurring. Maybe 10 points higher BP on the side where the flare is happening, this 80% of the time. The right or left side might have a slightly higher BP rating. BP may react due to pain so extreme pain can make the heart pump more and cause higher BP and even a risk of a hemmorage from High Blood Pressure in the brain from extreme pain. We say her blood pressure drop 50 points in 10 minutes with only a cold ice pack chilling her foot one time. So environmental chilling can sometimes effectively treat the symptoms as well or even faster than drugs.
You can chill the foot with cold water immersion which can be dangerous if it's more than 10 or 20 minutes. For most normal people over 10 minutes would be bad, but my mom can endure about twice that with the EM flares. Dipping your feet or hands in water will cause skin problems. One might add hydrogen peroxide in the water to reduce the skin problems and also use a moisturizing cream that won't affect the foot or hand by holding in heat. One can also use fans and cold A/C rooms or a swamp cooler design, blowing air over ice or through ice. And one can use spray bottles with cold water to spray the feet or affected area and also use thin cotton socks dipped or sprayed in cold water. And also chill pads, but chill pads and ice packets usually should be inside a sock so the pad or ice is not in direct contact with the feet. If you ever go into the hospital for a long stay, you will want to have a team maybe of friends and relatives that can help chill your feet with cold air and ice packets, if you have really bad EM. For a long stay you better have six volunteers lined up for any extended hospital stay.
Environmental chilling of the feet should be in your medical care plan before you set foot in a hospital. Believe me if you don't plan for that ahead of time, you will be in for a trip to hell.
photo of wrapping feet, see other watchman photos as well