Reading and responding to some of the other messages on this Forum prompted me to write my own message. Starting in January I thought I had the flu. I had all the classic symptoms; tiredness, weakness, achy legs and hands and overall yuck. The symptoms gradually decreased but then every once in a while I would get these strange shivers/tingling going down my spine out my arms and down my legs. My hands would be weak and clumsy. Gradually those went away and now I am left with a muscle soreness in my legs that is with me constantly. I have had this muscle soreness for 8 months, 24 hours a day, 7 days a week. I can't remember the last time I have moved my legs without them feeling sore. Sometimes (one or two times a week) they feel so weak, like i'm recovering from the flu, that I just have to sit and put my feet up because I don't feel like doing a thing.
I have done the ususal MRI of brain and spine, EMG, blood tests, Lyme tests - all negative. Physical exams are normal. I have left many a doctor stumped.
My neuro doesn't seem to think it's MS - but he can't be 100% sure. (He doesn't think its time for a spinal tap). The only other two symptoms I have is the occasional weakness/heaviness/clumsiness in my hands, but this lasts only a couple of hours and leaves. Also, I have been feeling lightheaded lately (but I also got a new perscription for contacts).
I'm sick of going to doctors - and one of them suggested that I could have had a viral infection in January and it's just taking an extra-long time to recover (hence the muscle soreness). What do you think? Does this sound like beginning symptoms of MS or just an extra-long recovery. Health wise everything else is fine. Should I start the round of doctors again or should I wait and see? Thanks in advance to any advice from anyone!!
I really don't understand what Christine's last few comments have to do with my problem of muscle soreness! I posted a question on this site because I am concerned, nervous, and a little bit scared about a problem I think is very serious. I am very interested in seeing what people have to say, what the doctor thinks and reading words of encouragement. I take my problem seriously and each time I see a response in regards to MY post, I hope it is something to help me. I'm getting tired of logging on and seeing this "jabbering" as Christine so eloquently put it, on my post!!! If you want to chat about astrological signs, please don't do it on my post. Thank you.
I can sympathize with you and your problems. Sometimes the docs here need a mental break too with all the work they have to do. You mention muscle weakness and clumsiness that comes and goes throughout the day. I did not see if your doctors ran a MG Assay on you. My doctors were very shocked to find mine positive after they ran it, they re-ran it and sent it to Mayo, and again it was positive for 2 of the antibodies. I developed weakness in April, not debilitating, but enough and have clumsiness with hands especially the right hand and apparantly I have lost my gag reflex in the process. I also get parasthesias. Although they cannot dx me with MG as I have a borderline single fiber emg, I am waiting for a re-run of that torture test to see if anything changes. I have had soreness in muscles occasionally as well. That may be one option that has not been looked at.
I'm not the other, but rather another, concerned about your condition. Due to the fact that every symptom you described points at the post-destruction capabilities of "virus" (ugly, havoc-wreaking phantoms that they are), I admire you for holding on as long as you have. Stamina is definitely in your corner because pain causes physical weakness and devastates the ability to even think clearly. Please fall-back and re-group for the strength it's going to take for another opinion. Fresh, like the CCF Neuro encourages. It is the only way to get the correct dx. From your detailed description of symptoms, etc, my guess leans heavily on it being an auto-immune disorder. Good luck hunting the dx and keep us concerned informed. -Kristine II
Melanie - suicide is not the answer to your problem. I suggest you make an appointment with your gp right away or check yourself into a hospital. I'm not a psychiatrist or a medical doctor so I can't give you any medical advice, but as a person who is going through strange symptoms myself, please don't do anything rash!!!!!!!!!!!!
Dear Elizabeth, Thanks for caring enough to post a message while you're suffering yourself. (To CCF Neuro MD--it's not acute. it's been going on for two years now, that's what makes it so frustrating.) Elizabeth, I think I'm too scared to die to commit suicide, but like everyone else, I want my life back. I see my GP on a regular basis and she takes a very casual attitude to all this suffering, saying that it won't kill me and I should be patient. I guess you know that patience wears out after suffering so long. Your family cares a lot at first, but then they have to get on with their own lives. My husband is so frustrated with it, he's started sleeping in a guest room and rarely speaks. I guess I was just feeling very isolated. Elizabeth, you helped a lot. Thanks for caring and good luck to you, too. (I don't mean to take up space on your post--forgive me.) Thanks again.
Melanie - i'm sorry for what you're going through, and it sounds exactly like the same thing I have. In January it will be going on one year, and I have noticed a difference in these almost 12 months. The pain/soreness has diminished - not entirely - but it's a lot better. I don't wish you ill, but i'm glad someone out there has what I have so I know i'm not going crazy and it's not "all in my head." Thanks for taking the time to respond. I hope yours clears up completely!! Good luck to you. --- Elizabeth
Dear Elizabeth, I was thinking about your muscle soreness last night and was wondering if you could possibly have the same thing I am supposed to have. I also have had extreme muscle soreness, but in my lower back and rear end. The muscle is just very, very sore, there's no other way to describe it. My labs also came back normal, except for a slight anemia--11 and my doctor wants it to be 13. Apparently, the muscle soreness resulted from an inflammation of the tissue covering the muscle and the joints in the lower back and rear. When an inflammation is present, the cells can, do, secrete a sticky substance and the tissue can literally get stuck to the underlying muscle creating extreme soreness, especially on movement. After 2 years, my soreness is better, but I have nerve irrtation that drives me crazy. The microscopic sensory nerves can get stuck with the microscopic muscle fibers and become very, very irritated and cause all sorts of strange symptoms--not dangerous physically, but emotionally, it can make you a wreck. I, too, am weak--don't know if my inflammation started with a virus or not but could have. Also, the circulation in the area can become poor. The little arteries supplying the tissue and skin get stuck as well and don't work as well. Sorry I'm not explaining this well, but I'm not an M.D. I was on pain pills for a year and only stopped last month. The pain is a lot better, but still there. The nerve irritation comes and goes, depending on what I do. I've been told, it's all part of an inflammation and the body needs time to heal itself. I went to four doctors before this was diagnosed properly, so I guess it's not an easy diagnosis for everyone. An inflammation can always be cured, but unless we take away the underlying cause, it will come back. Hope this is a little helpful. Good luck and take care. Let us know how you're doing. Melanie
Hi Elizabeth, Thanks for the good wishes. I know exactly what you mean--I hope yours clears up completely, too, but just knowing someone else knows how miserable this thing is makes me feel less alone. I, too, had those awful tingles down my arms and legs and sometimes in my ribs and even shoulders. Awful. My pain has also taken a long time to get better and it's not gone yet. I still have a sore spot--muscles--in my left hip and sometimes down my left thigh. But at least I don't need pain medication now. The worst part is the nerve irritation and even that is diminishing. Though not an M.D., I'm sure we're not crazy and it's not all in our head. I do feel we'll both recover completely, but I think sometimes it takes the body a long time to heal itself. Sometimes others just cannot understand our frustration feeling so miserable for so long. But you're definitely not alone--I have this miserable thing, too. If I come across anything new, I'll post. Take care. Melanie
Dear Elizabeth, I've found something that might help you, as it seems to be helping me. It's a form of massage I learned from a physiotherapist here in Switzerland where I live. You massage the affected area across the muscle, toward the outside of the leg, not up and down. This cross-massage is supposed to help release adherent tissue and entraped nerves, etc. that cause tingling, shaking and pain. You have to do it very lightly at first and only for five minutes but as the skin warms up you can do it longer and harder. Now this irritates the nerves in my sore areas at first because it tugs on trapped tissue but I have found that once the irritation wears off, and it always does in a day ro two, I'm aignificantly better. Not well, yet, but better. I sure can't give you any medical advice, just share information. Maybe the CCF Neuro would like to comment or maybe you could ask your own doctor. I sure don't want you feeling worse, but this has helped my nerve irritation and pain to diminish. I was told the irritation is natural because the tissue is adherent and when the massage is done, it is pulling it loose. Well, I hope this information helps. Good luck. Melanie
Melanie: I'll try it tonight - thanks. On Saturday and Sunday I went for a mile walk on both days and Sunday night I thought I would cut off my legs the pain was so incredible. Today they seem fine though -- it's strange how exercise is suppose to be so good for you, but in my case I have to drag my butt outside because I know the end result is going to hurt. The massage definetly sounds like a great idea. Thanks for commenting - Elizabeth
Elizabeth, I know EXACTLY what you mean! Exactly!!! Maybe you did have an inflammation, like me, and now the skin is "stuck" to the underlying muscle just like mine is. Not the skin we can touch--the tissue that covers the muscle--it has lots of nerves that can cause irritation and pain, pain, pain. When I walk it hurts, too, and the more I walk the more it hurts because the stuck skin doesn't want to glide over the muscle freely. But I've been told that walking and swimming (or water aerobics) are the best thing for getting it unstuck and ultimately reducing the pain. I have to drag my butt outside every day, too, for a one hour walk. It hurts, but I do think it's helping. PLEASE do the massage carefully and GENTLY because it can irritate. I did it Saturday morning and it was irritated all day Saturday and some on Sunday. Today, I feel much better. It'll come back when I sleep, though, until the skin gets completely unstuck, but each time it gets a tiny bit better. It's frustrating because recovery is so slow--and it hurts! Good luck with the massage. Go easy--I sure don't want you to feel worse. The fact that the mile walk caused pain and then, today, you feel okay is just like mine, though. Exactly. Let me how you're doing and GOOD LUCK!
Hi Elizabeth, Let me know how you're doing. Mine's a little worse today, but not horrible. Hope the massage didn't irritate. It takes a long time to get well from this, but I know we'll both make it. Let me know. I feel like we're sort of recovering together. Makes it easier and I wish us both well. Hope to hear from you soon.
Hi Melanie - Doing a little better today. When I woke up this morning - I didn't move a muscle - and I had no pain or soreness and it was like being 100% again. Of course the second I moved my leg muscles flared right up. UUGGHH!! They feel OK today, but for some reason they are a little weak. Do you ever get that feeling that your legs won't hold you up or when your standing they just feel like they might give out? I think i'm definetely having one of those days. I did a little of the massage last night - I don't know if i'm doing it right - all I am doing is kind of kneading my muscles out (not up and down) - does that sound about right?
None of my doctors have ever made a diagnosis on me - but it seems pretty weird if we both have the same symptoms. I wonder how long it's going to be before we both get "unstuck".
Thanks for your well wishes and your caring - I think dealing with this is going to be easier knowing that we are going through it together - let's be unstuck soon!!!!! Elizabeth
Hi Elizabeth, Just a P.S. to my LONG message. I just read the beginning of your post again and I really don't think you have that peripheral vascular whathamacallit. Did you ever find out? You know, when you have this stuck skin thing, the tiny capillaries that carry blood to the skin also get stuck and don't work so well. The skin CAN feel cold and hard and it's not as pliable as it should be. It won't hurt you, but it does cause misery. I know I seem to be stuck on stuck skin but I'm convinced now that that's what I have and you seem to have exactly the same thing. I keep an open mind, but I'm sure about myself. It's the only thing that makes sense. My left hip used to actually be cold because the circulation in the skin wasn't good. (I know I said my general circulation was fine, but in these stuck skin areas, it's not.) It was cold and hard and felt like a big rock under my skin. Now the skin feels warm and soft but it still hurts, especially if I lean on it or apply any pressure. The massage is supposed to help the circulation, too. It's supposed to free the trapped nerves and capillaries and help us get well. Walking is supposed to do that, too. But it's a long haul. We'll make it, though. Hang in there. Talk to you later.
Hi Elizabeth, Hope the day wasn't too bad. Yesterday was a good day for me but today was not so good. Don't know why. For me, it's a lot easier knowing that we are both in this thing together and recovering together. I hope you get to be 100% but you know what I mean, it helps tremendously to know you're not alone. Don't I wish it'd come unstuck soon! The sooner the better. Like tomorrow, when we wake up! But I've accepted that that isn't going to happen--no overnight cure. Like you, I went to a lot of doctors, but unlike you they gave me a lot of diagnoses--wrong ones. One said anemia. No. One said it was all in my head. Definitely no! One said poor circulation. No, my circulation is good and I didn't see how it could be poor because I had been so active--hiking, skiing, mountain biking, etc. Well, it was fine. Finally, after nine months, I found a doctor who told me I'd had an inflammation--we don't know how it came unless it was sitting too long in my desk chair working at the computer and not taking enough breaks and putting too much pressure on the skin and she explained about the stuck skin. I thought the skin problem would just go away when the inflammation went, but apparently it doesn't. If you put your palms together loosely and move them up and down--that's how the skin is supposed to glide freely over the muscle. If you put them together hard and try to move them--that's how it is when it's stuck. So you can see why we get pain on movement--the skin is tugging on all the microscopic sensory nerves in the skin and muscle and nerves rebel when they are pushed or pulled. That's how it was explained to me and that's why movement causes so much pain. Unfortunately, I was told there's nothing they can give us to unstick the skin and movement is the best thing. I guess we have to hurt to help. It must be frustrating not having had a diagnosis. I'm not a medical person, but I'd bet a lot you don't have MS or ANY neurological disease. Not that you're not miserable. I know I am. I was worried about a neurological disease in the beginning and my doctor said that nothing in the brain causes this. Then I was worried about my spinal nerves, but they are okay. It's skin! And I really bet yours is, too. Right now, I just had those tingles down both legs--don't get them much anymore, but sometimes--it's the nerves. I'm not sure, but I don't think they can diagnose this except by symptoms--lab tests would be normal and I don't think an inflammation of the sensory nerves would show up on an MRI. Bigger nerves, yes, but not these tiny ones. My legs don't actually get weak, but sometimes they feel weak and shaky. Not all the time, but sometimes, especially in the morning before I've moved around a lot. Once again, I've been told it's the nerves in the skin that causes that feeling. I can tell you, I, myself am simply tired and worn out all over from dealing with this thing! Even though my legs feel shaky sometimes, I actually think they are getting stronger because of all the walking I've been doing to try to unstick this wretched thing. But, yes, I've had the feeling. What is really frustrating to me is that I walk for two or three HOURS and get it feeling pretty good, then after I sleep--it's back. Also, I never know when I'll have a good day and when I'll have a bad one. It's so unpredictable. Yes, you seem to be doing the massage right. Never go up and down--with the muscle-- or that will make it worse. Across, toward the outside. You want to separate the muscle fibers and the nerves. Just go easy until you see how much your skin can take. That's another unpredictable thing--you have to experiment to see what works and what doesn't. I remember LAST Christmas, I was cleaning my house and just that moving around made my left hip hurt so bad I sat down in a chair a cried and took two Tylenol. The crying got rid of the frustration (temporarily) and the Tylenol took the edge off the pain and I got through the day--again. It's improved some, but I'm far from well. This summer, I had to rake leaves in my yard and it didn't hurt as much, but it got really irritated and shaky. But I can clean house now and not have to take pills. Would you believe--I was so healthy before this and never had to go to the doctor! It's not poor health--more like an injury. Well, that's all the new information I know for now. You know, I'm new in this Forum and I don't know how long they let you post. Maybe a long time. But I'll give you my Yahoo address and feel free to use it anytime. It's ***@****. Boy, I rambled a LOT tonight--guess I have a big mouth anywhere. Let me know how it's going for you--on the Forum or at Yahoo. Hope you're having a good day. I sure do hope yours clears up completely but it IS easier to get through the misery when you're not alone. From what you've described, we have the same thing. Well, take care and let me hear from you. In the meantime, I'll keep good thoughts in mind for both of us.
I would like some information of fibromyalgia .Had X2 surgeries on my left shoulder for a torn labrum have a 40% disability cant use the arm for anything over my head. or even extension. have numbness and tingling in my pinky and thumb. get migranes and some days find it very difficult to function suffer from depression and taking meds have finally after seven years of chronic pain saw a chiropractor. I know its only temporary but i do feel better still have muscle pain and weakness but every MD. i have seen seems to blow me off. losing controll. no one will listen . if you can help please i could use some on to .
Fibromyalgia is a clinical diagnosis that entails trigger point pain, pain that is diffuse, fatigue, etc. We usually do not diagnosis and treat fibromyalgia and leave that up to our rheumatologist colleagues. The etiology of this problem is unknown, as treatment is also variable. Chronic disease can and often does cause depression, this is especially true with chronic pain. I would see a rheumatologist to see if you have fibromyalgia.
Why are you answering questions not pertaining to the problem of the original poster in the thread? Shouldn't they attempt to establish their own thread as others must do? This is discrimination against those who have enough integrity not to intrude on another's thread! I was going to sponser a thread but after seeing this...I think not!
Forums open up a myriad of different subjects within one idea. If you don't want to participate in the myriad qualities of a forum... then you don't have to. We won't discriminate! An we wouldn't miss you either.
People like you have no right to impinge on someone else's thread--which probably took them a LONG time to establish. People like you are also why THIS forum has no money and has to go begging. No one wouold miss me? Well, no one has needed YOU so far so get lost! The subject is ELIZABETH and SORE MUSCLES. If you don't have anything to say regarding THAT subject--you're not needed OR wanted.
Sorry Paticipation, but I have to agree with Laurie. Yes, threads DO open up a myriad of possibilities, but those possibilities should have to do with the original poster's problem. People should not attempt to introduce new problems and questions on another's post. I can sympathize with all those who are ill and want to post but can't, but his thread is about Elizabeth and muscle soreness and I think we should all have the integrity and responsibility to Elizabeth to stick with that subject as long as this thread exists. You, Participation, sound like you need to be posting on the Psychiatric Forum. All that bottled up anger is going to harm you some day.
To Elizabeth--If you have cramping in your legs as well as pain, I'd investigate a circulatory problem. Also, if they feel worse after exercise, it could be circulatory. Ultimately, though, exercise is what helps unless the problem is in the deeper vessels, then you may need medication. Good luck.
Just putting in my two cents. I think when someone establishes a Post, as Elizabeth did, everyone should be welcome to voice their opinion regarding the poster's problem only, or we lose track of what the post is supposed to be about and the poster gets no benefit. I do think it is extremely rude to post a question on someone else's post unless that question was posted my mistake. I am sure the neurologist was just trying to be compassionate and answer as many questions as possible, but I really do thin we need to stick to the original post or the benefit of this message board is lost for all of us and not just the original poster. Steve is right. And Participation, I think it is, I do think you owe Laurie an apology. You were extremely rude and rudeness is very uncalled for here. We all have our problems but we must respect one another and that means respecting their post. So, I think Laurie and Steve are right and this should be about Elizabeth's post. Just my two cents. Thanks. By the way, I agree with Steve about the circulation.
I apologized for my intrusion way back on September 23, 1999. Participation isn't the issue here. The issue is why did Laurie even make such a comment after Elizabeth's post was re-established? I think Laurie was wrong for making her intrusion and so was Participation for returning the snideness. You both need to apologize to Elizabeth. Neither one of you made comments concerning her post. CCF Neuro RPS is disgusted and so am I. Elizabeth? I'm sorry for the second time. Please accept my apology for intruding.
Christine are you flat out nuts! Why all this posting about astrology and your "novel?" Go be disgusted somewhere else and if the neurologist is disgusted it is by the likes of you! Steve is right, you need to wander into the Psychiatric Forum! As for me, I only tried to help and am not apologizing to anyone!
I did not say you needed to apologize to anyone. As someone who is suffering from a problem similar to Elizabeth's I read her post but do not post myself, not wanting to take up space someone with a different problem could use. It can take a LONG time to post here and we should not intrude on a post and attempt to make it someone else's. I never even said Paticipation should apologize--I just said that someone with that attitude should get lost. There are plenty of people with SERIOUS problems on this Forum and people with Participation's attitude aren't needed. As far as the Neurologist goes, how do you know he's disgusted? Do you have personal contact with him? He simply said he hoped we all felt better after getting it out of our system. Perhaps he is amused. I don't know--I don't know him and I don't think it's fair of you to say he's disgusted when you don't know if he is. I do think the person who posted above you is correct in saying he was trying to be compassionate, but I also think that by answering questions on someone else's post, it changes the entire character of the post, unless that question pertains directly to the original poster's problem. As you can now see, many messages have now been posted that do not pertain to Elizabeth or to sore muscles and I have noticed that Elizabeth has not posted a comment for a long time now. Perhaps she became disgusted with all the talk of astrology--there ARE astrology message boards, you know. This Forum is not for amusement--the people here have real problems, problems that are threatening their very existence and are far more serious than what astrological sign they happened to have been born under. Frankly, I think you put the Neuro in a bad position with your constant comments and questions about astrology--I think that would have disgusted him far more than comments about the integrity of the Forum and it's posts about which he probably cares a great deal. Christine--I apologize to Elizabeth and to the neurologist, who I am sure was just trying to help. I really don't think you should LABEL him as disgusted when HE did not say he was, nor do I believe you have the right to be disgusted yourself. This is not your post. Elizabeth--I apologize, but I was only attempting to understand why the subject should be diverted from your post and your problem. CCF Neuro--I apologize if you are disgusted, however, I think it would take a LOT more than this to disgust you! Please let us know if you are, indeed, disgusted. Now, can we PLEASE stop bickering and return to the subject of sore muscles?
Elizabeth--I have no answers for you. I have tried everything. Had all the tests--negative. Tried exercise, not exercising, cold packs, hot baths, rest, massage, acupressure, acupuncture, tranquilizers, antidepressants, green tea, lotions, vitimin B-12, calcium and magnesium--nothing works and I am as sore as I was months ago when I first noticed your post. If anything helps I will let you know.
He said he would stop answering postings. That's all. I also found my previous actions to be out of line way back when. As for a personal relationship? No... he just helped me through my massive craniotomy with a lot of good advice and support. It was tough and so was the follow-up stereotactic radiosurgery. Since he is such a good physician, I painted one of my characters with his likeness and devotion. I've said my piece... now I leave it all up to you to pass judgement.
Christine--I will apologize to all. PLEASE let's all just stop now. I hope EVERYONE feels better and gets well! Let's none of us waste time and enregy on anger, disgust or anything else. I apologize to all. We are all friends to help one another. Okay? Now back to muscle soreness. I hope all is okay now.
Has anyone noticed that Elizabeth is NEVER on her own post anymore? Is she well? Gone? Doesn't care? Why is the post taking up valuable time and space when the poster doesn't give a darn? I'd really like to know. Don't everyone go jumping on me like with Laurie. It's JUST a simple question! I wish EVERYONE well and my question DOES have to do with this post!
Yes Hillary, I do care what is going on with my post but was not quite sure how to respond to all those messages.
Thank you all for your opinions and comments and well wishes. The circulatory issue was brought up to me once before and I have made an appointment with my GP for a follow-up. It has also been brought to my attention that my birth control pills might have something to do with it. Has anyone else heard that? I switched (around the same time my soreness began) to the new birth control pill called Ortho-Trycylene (totally spelled wrong). I have an appointment with my OBGYN in a couple of weeks, so I plan to follow up with her about that.
Gee,Elizabeth has almost same symptoms as I do. The stress of try to find out what you have is enough to drive you mad. The Dr. who just do the same old proceedures. I now look into the internet for ansewers and still see Dr.s not many who care next it ucla los angeles, california. symptoms weakness, soreness in arms and legs bending to do laundry ,feed the dog, cooking , changing my 4yr olds clothing, changing the radio station, you name it it weard and bothersom. but i will find an ansewer next blood test is Anti-Acetylcholine Receptor Antibodies, CBC with differential, iron studie, Ferritin Free T3,Packed/spun red cells for minerals, They say possible Fibromylgia I dont think so and they also are not sure The nurologist found slowness on the left side of the brain what ever that means. I am upset at him he could tell me why not sure maybe an infection or virus. Well I now have been told I do have herpes 1 and 2. this is also a pain as well 2 is not in the private parts thank god the sore is painfull like singles, not to mention night sweats maybe 1or2 nights in some months. they also cant give me ansewer to that either. I thought possible change of life they say no hormones are ok. gee, this is driving me wild!!! if a Dr. or some smart person know anything please email me this is something else! thanxs email is www.***@****
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