Additional problems with FM?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by sfd647, Oct 13, 2006.

  1. sfd647

    sfd647 New Member

    I have been diagnosed with FM about 3 years ago since my brother and sister were as well. Most of you probably know how uncomfortable it is to say the least. It is very hard to describe it to others who are not suffering with FM. I try to tell them that the pain gets so bad it is like a mac truck ran over you and came back to make sure it did a good job so it can run over you again. Plus many times I would just feel like I was having a bout with the flu. The only way I have found to ease the pain is to stretch the muscles if I can. That seems to release it. Pain meds don't seem to touch it. I am going to talk to my doctor to see about using Requip, a dopamine related medication. ProHealth said that FM patients seem to have some relief.

    Another bothersome problem is RLS. I believe they said that the meds like Equip would help that too. Do those of you suffering with FM, have any of these additional problems like RLS? Do you notice that sometimes it isn't only your legs that will jerk but other parts of your body like when someone comes up behind you and scares you. Another problem I started having lately is my jaw. It seems to want to lock up on me like it is stuck. I don't know much about TMJ but all I know is that lately I have had severe jaw pain to where I wasn't sure if it was a sinus, ear, tooth abcess or what. I get this clicking sound that happens on either side of my face by my ears. However, the last 2 days, that clicking is now like getting stuck. I have to wiggle my jaw to break it loose. Anyone out there with these kinds of things? Are they related to FM?
  2. CanBrit

    CanBrit Member

    I was diagnosed 2 1/2 years ago. I also have those lovely weird symptoms.

    The jaw....well I find that I clench my teeth more. Whether it's from pain or just this condition I don't know but it causes pain quite frequently. It also makes you feel like you have a sinus infection as well. Unfortunately I do have sinus problems too so it gets a bit confusing.

    I also have RLS. I'm currently not taking anything for it because I feel like I'm on too many pills as it is. It's annoying but I'm getting used to it. (Nobody like's to sit beside me on the couch though!!!! All the moving drives them nuts)

    I get costochondritis (inflammation in between the ribs). Looks like this is very popular with FM'ers.

    I try to walk every day a lunchtime, pain or not. It gives me a mental lift that I need. I take a calcium pyruvate pill about an hour before and I find it helps with energy and also fat burning. (You can use the search to check this supplement out. Other people on this site have used it)

    All in all...it's quite an exciting condition!!! You never know what is going to hit where and when. Could be worse though!

    Regards,

    Eileen
  3. sfd647

    sfd647 New Member

    I have been researching up on FM til I am blue in the face hence the little icon on the left. I am glad to know that I am not nuts. I too have sinus problems anyway. It was interesting that you said that you seemed to clench your teeth more. I do too. I never knew why. I thought, I am not anxious about anything or having a tough time doing something, you know all those things that might cause one to clench their teeth. It is just there!! However, like I said, this thing in my jaw is the new "kid" on the block. I am trying to remain calm about things and not get frantic. When the jaw seems to lock up on me, you hope that you don't have a lock jaw situation. I want the thing to keep moving. Maybe it is tired because of all the talking I have done in the past as well as present?! (smile) I will look into those supplements you mentioned. I have many pain issues and so it is hard to know which one is responsible. I would like to take walks but the neuropathy makes it difficult. Then the degenerative joint disease with a detiorating spine by my hips doesn't make it any easier either. However, I have been taking 1500 mg of Glucosamine and 1400 mg Chondroitin EVERY day. It took about 12 days but there it was!! It really kicked in!!! I have found movement to be more tolerable. Now if I can just get this dumb lightheadedness to go away. Only trouble is that my doctor says the imbalance disorder goes with the territory of peripheral neuropathy. I too am so tired of all the pills. That is why I really don't want to add another one like Equip but IF it really can help to minimize the pain and discomfort, then I am going to take it. Perhaps if IT works well, I can cut down on the pain medication. What scares me is that I am on strong pain medication. However it doesn't do a number on my head like feeling a bit high? So I don't get a buzz taking it but I don't like taking it as often as I do but if I try to cut it out, then I feel the pain in my legs and the burning. So I am not a martyr so I do take it. Just not as many times a day that I could. Like I said, taking those nutrients has helped me so much that I don't find that I need the extra pain medication. However, I have so many things that cause pain that I don't know which one belongs to what.

    I just know that in the last 3 years, my body is really looking very bad. My skin is horrible from all the episodes of being in the hospital with cellulites ( a deep skin infection that goes into the deep tissues of your skin). It has ulcerated so many times. I have been on many harsh antibiotics in IV form. Then I take them at home. It is tearing up my skin. It is so horrible to look at. It is scaling, peeling, tough not smooth, hard parts that look like callusses or something. They are heavy tissue raised above the normal skin tissue. It is all wrinkly and shriveled. Now, it bleeds at the very slightest scratch of a little crusty pimple. Wounds are very hard to heal. Now I presume this is all due to the cellulitis. I think the white patchy, scaly stuff on my legs and feet are from all the antibiotics.. it is like a powder on top. It is just plain NASTY!! I hate all these things that are hitting against me now. I should be enjoying life not having to stay home with so much pain and other things like this cellulitis. I know that kind of infection is very dangerous. That is why I try to watch out for it and get a head start if it should hit. Anyway, thanks again Eileen. Forgive me for such a lengthy reply.
  4. sfd647

    sfd647 New Member

    Thanks Nancy. I did take Klonopin for a long time. We changed it about 18 months ago. I have had a complete overhaul in a way. :) I can't believe all the meds I am having to take now. Just 3 yrs ago, life was so much simpler. Then the pain increased as well as the imbalance from the neuropathy. I have no idea when the 2 small strokes happened. With all the falling I had been doing, it could have happened during one of those episodes but then it could have just been the imbalance disorder with the neuropathy. I did have that one strange encounter when I thought my foot was dragging and it only lasted a few seconds. I dismissed it because nothing was paralyzed nor was my speech impaired. No sagging, drooping face. Nevertheless, doctor thought that I may have had a TIA. I was taking 2 mg of Klonopin twice a day. I think it was 2 mg. I can't remember now. I used to take vicoden then switched to vicoprofen which worked better because of the ibuprofen in it. That helped the inflammation inside. Then I take muscle relaxor twice a day to help my back. The pain killer they have me on is methadone. I think the methadone helps better than the vicoden but nothing really takes ALL the pain away. Sometimes I wonder just exactly what my pain level is since all this began. You learn to live with your situations so you never know when you keep increasing your pain meds, just how far on the pain chart are you really. That is if you were to put someone in your body who has not had any symptoms at all to adjust to, would they be absolutely out of their mind with pain? It is very hard to tell nurses or doctors who want you to tell them the pain level on a scale of 1 - 10 how you are feeling at that moment. I don't know about all you who are suffering like me, but I would say my normal starting is at least 5. Most of the time, I live with a 7. I am taking an antidepressant, Celexa, that is good. I have been on all kinds of things that was suppose to help but went the opposite way on me. Neurontin is suppose to be a wonderful drug for those with Neuropathy. For me, it is horrible. I tried taking it again to see if it would work better on me than when I first tried to take it and came off. Well, you talk about jerking legs. Try sitting in a chair and out of nowhere your arms goes flying off to the left which if someone was sitting there, you would have slapped them right in the mouth. Wow!! I couldn't believe it the night that happened. Then my tongue would wiggle alot. So the tremors had to go. Very difficult indeed to adjust to these insidious afflictions. Plus many of them have the same symptoms so sometimes you can't tell which one is hurting you the most or is two of them working together on you at a given time. All I know is that I feel that my life has been taken from me. I aim to get it back. I will hunt and search for as many nutrients that can be taken that are GOOD for the body instead of perhaps hurting it. Whatever it takes, I am going to get ahead of these things. I believe God heals. I am standing on His word. I know many of you don't believe in that sort of thing. I don't understand why all don't get healed who have trusted in Him but that doesn't mean that you just stop believing. I have had many miracles happen in my family that were actual miracles. My son for one. God healed him of an enlarged heart when he was first born. I asked doctors if his heart would ever be normal and they looked at me like I was crazy. Nevertheless, I kept on trusting the Lord. I wanted my son to have all the abilities to run and play sports if he wanted to without me being afraid that he would die of a heart attack or something. Well to make a long story short,they took another heart xray when he was 5 months old and there it was. A NORMAL heart to their amazement. So that is what I am holding on to. My faith and whatever God wants me to take. He is the healer anyway whether it comes supernaturally or whether a doctor aids us with the use of medicines or nutrients. So I say to all of you. NEVER give up no matter how discouraging your days may be. Press forward. Take back your lives. I have been getting more strength back in the last couple of months. Thanks for all your tips, everyone. That's what we need to keep doing. What may work for you, may also work for me. That is why we share and give each other support. God bless all of you.

    Sylvia
  5. jole

    jole Member

    I too have the RLS and my arms, shoulders, etc. will also twitch and jerk at times. Especially bad at night when I try to sleep. Sometimes it is very annoying and I can't sleep, but at other times I just can't help but laugh. There's no real pain to it, just a quick jerk or two that is totally unexpected. Well, sometimes for hours on end actually. I also have tremors of the hands at night. After a few hours it seems to settle down, but sometimes I will wake in the night with it also.

    As for the TMJ, it's terrible. Yours sounds just like mine. Sometimes the pain is so severe I cannot chew to eat, or even open my mouth until the pain pills kick in. I asked my dentist about it and he said surgery is sometimes successful, but he would not recommend it for me. Seems it is just another symptom of the FM for me.

    Usually when my jaw is tight it's when the rest of my body is in a lot of pain also. Seems to go along with the sore throat thing as well. Some days it is just fine, but not often enough to suit me. :)

    You know, "normals" couldn't understand this life if they tried. I sure couldn't have 5 years ago!! So good to have each other to talk to, isn't it.

    Friends - Jole

  6. sfd647

    sfd647 New Member

    Thanks Nancy. I really have liked coming here for about a week now. It really helps to share with each other. Sometimes it can get a bit overwhelming when you are fighting giants. :)

    I will say one thing, Nancy. I did like the vicoprofen but to be honest with you, the Methadone works better. You don't get a buzz. It is almost like taking aspirin or Ibuprofen. Just a pain killer. They started me out with one. HA! that was nuttin honey. :) Then we went to 20 every eight hours. Well since I have a poor pain tolerance, we ended up doing 40 mg every 8 hrs but I do the 40 every 12 hours unless there is a very high pain level that day. One thing I discovered about the methadone is that it helps me tremendously when I have the burning sensation in my skin. When I would go into the hospital with the cellulites, my leg would burn so bad that I couldn't have anything touch it. They would give me shots of dilaudid which is like demerol but better for the system. The last time I was in the hospital last March, I didn't have to have any of those shots at all. The difference had to be the Methdone. That has been a very big blessing.

    I have been on most of all of the pain meds. Only one that I have not had is oxycondin. Is that how it is spelled. I may have slaughtered that. :) I haven't tried it nor do I want to. I hate having to take higher and higher dosages. That is why I like the Glucosamine and chondroitin combination. I tell you, it really has helped so much. I also take B Complex 150. I would take the higher one if I could get my hands on a 200. I should be taking them twice a day. The B vitamins are great for nerve tissue. Since FM has so many of the little nerves giving us trouble in the muscles, etc... I figure the more B, the better. You can't really get over toxic with those. They are water soluble and they evaporate off. I get the slow time released ones. I take C because I was told by my pastor's wife years ago who was very much into nutrients, that C was needed to help Bs absorb into the system better. So I take C 1000 in time release as well. Think I might increase that to twice a day as well. It too is water soluble and evaporates. Plus it helps the immune system. Gosh, I got to stop writing. I use up too much space for others to write in. Who wants to read a book every time they see something. Sorry gang.

    Sylvia
  7. sfd647

    sfd647 New Member

    Well, Haley, that was very enlightening. I will check it out further. Only thing is that it isn't just what recently happened to my jaw/face. The other pain has long precluded that. Everything started with the neuropathy. However, the more I have learned about FM, I am more convinced that it has plagued me in my earlier years. That explains why I would always feel so bad complaining about not feeling well and pretty soon, my ex husband and children though that I just didn't want to do anything. That really was not the case but I didn't know what was wrong with me. I am not sure about the CFS but I do know about trigger points.

    I first learned of them when I went to a chiropractor in my home town. He was the brother of a guy I graduated with. When I had told him about certain pains in my neck, he went right to the spot up in my shoulder and begin to grind and press, massaging really hard. I almost lost my breath. Pretty soon, I didn't feel anything and all the tightness was gone. Later on, I saw on one of the talk shows about finding "certain points", of course we know that they are called trigger points, and they were applying hard massage to them to relieve pain in various parts of the body. The chiropractor told me about kinesiology. I probably slaughtered the spelling of that. That is massaging those trigger points. It is interesting that with FM, those various points that are sensitive are not called trigger points but rather are called tender points. I read an article and they were very specific about both. Interesting. However, tender or trigger, the spot is the spot.

    I have so many different problems that they cross over each other so you never know which one is responsible at the time. I wanted to also thank you about mentioning Effexor and Lamictal. I have used Lamictal and had no problems, however, later on my doctor decided to try me on something different that didn't agree with my system so I quit it right away. I can't remember it at the moment. I asked if I should go back to Lamictal and he said no. While I was in the hospital with one of my cellulites episodes, a neurologist came in to see me and he was the one who put me on Lamictal. Took me off Klonopin and put me on Lamictal. So now I don't use either of them :)

    Effexor was the next medication my doctor wanted me to try. He felt that it would help me with the pain. Because the side affects was about the same as what was already going on in me, I thought I would not know if I were having a side effect from Effexor so I didn't start it. I want to try Equip first. I learned about the dopamine inhancers, as I would call them (smile) in one of the ProHealth articles about the missing piece of the puzzle. I saw what that kind of medication could do for FM sufferers and felt that rather than take Effexor, I might get better help with bringing my dopamine level up to where it should be in case it was low causing all this miserable pain. Any edge it can take off would be fine. Taking it all away, is better yet :)

    So I appreciate all you help and assistance with your articles. I shall research them, ponder over them while I am being enlightened and see IF that is something that might be an underlying problem that hadn't been discovered. Quite frankly, I hope that is not one of my situations. I feel like I am a Trivia Pursuit of Pain and most certainly NOT a Maypole of misery. :) even though you feel like you have all those strings attached all around you binding you up. I WANT MY BODY BACK!! Ok.. I feel better now that I had my tantrum. Gotta let it out once in awhile. lol Thanks again.

    Sylvia
  8. sfd647

    sfd647 New Member

    Sorry Haley. Got the wrong initials. Used the CFS which of course is Chronic Fatigue Syndrome instead of CMP. Goodness. I also forgot to mention that I too, find myself grinding my teeth. Grinding, gritting like under stress and then like I said, hearing a clicking noise that ended up locking up on me. Not long.. just for about a second or two. You just move the jaw a bit and it moves again. Was a bit scarey the one time. If those other drugs you mentioned might have had a side effect doing that to your jaw, it is a good thing that I have not stayed on Lamictal or even started the Effexor IF that could have happened to me as well.

    Anyway, that's it. Just wanted to let you know that I realized I wrote down the wrong initials but I was paying attention to what you wrote. The only medications that I am on that would be up for questioning would be Celexa, the antidepressant, of which I have been taking for 4 years now with no problems. Then there is the Methodone for pain. I have been on it for a year now. I used to take Vicoden. Methodone helps me alot as I have already mentioned in other replies. The burning would be so bad but since I have been on Methadone, I don't get it to that degree anymore.

    Well, my front teeth are split so I could fit a straw in between them in case my jaw locked up and I had to "drink" my meals. (smile) Actually, I had a friend who had to do just that when she had surgery on her jaw. She DID have TMJ with such severe headaches. They were worse than migranes if that would be possible but they truely were. Until the jaw healed up where they had to break it, she had to use a straw because her mouth was all wired shut. Thanks again.

    Sylvia
  9. Goldyfm

    Goldyfm New Member

    Well I have FM and RLS and now I notice that I clench my teeth all the time. When I wake up in the AM it is hard to get going as I can feel the after effects of sleeping with my jaw clenched and my hands as well. Some days it is 3-4 hours before I can fully extend and bend my fingers for my age. And I am supposed to be able to continue to do clerical and accounting work like this. I wonder how many others who typed or used adding machine and shuffled papers for a living simply cannot perform the functions of their jobs just because of stiffness in the hands. I sometimes have a hard time just signing my name to a check for my bills. I have gotten to the point I let others fill out the check and I just sign it. As I live alone, I don't know if the jaw clenching affects my speech as my yorkie hasn't complained. See my RLS keeps me on my toes.
  10. natesmommie1

    natesmommie1 New Member

    I do the soap under the sheet above my feet, since i have i haven't had any leg pain at night,
    i have had tmj for years
    my teeth sound like a popping sound
    i have had fibro since2003
    Bernadette
  11. sfd647

    sfd647 New Member

    Bernadette... I saw your reply regarding using the soap between the sheets like was mentioned by another person when trying to get relieve from RLS. It is so hard to imagine how THAT can help RLS. Why should soap do anything like that? I don't understand. Not saying that it doesn't work, just that I don't get the connection.

    The grinding teeth, clenching jaw, popping sound, that would all be connected to TMJ? The teeth don't pop, just the jaw point by the ears. Maybe that is what you meant and just mentioned teeth. This popping only just started since about 2 months ago. While that was happening, I started having the worse toothache. It was like having nerves exposed in two, at least, teeth. Thinking that I could possibly have abcesses or a sinus infection, I went on an antibiotic. The pain sensitivity diminished quite alot. I have a bit sensitivity yet but not as powerful. I cried for several night because of it being so severe. I am not able to get to the dentist to be sure that it is not tooth related. There is the possibility of two bad teeth but it also affected the bottom molar as well. I don't have the money, unfortunately, to have any extractions, any root canals or any fillings done. I am on medicare only and they don't pay for those kinds of services from a dentist. Terrible to need something and have no resources to pay for the treatment.

    Also for those having stiffness in any of their joints to include hands and fingers, I would recommend highly using the Glucosamine/Chondroitn compound in your pharmacy or GNC store where they carry nutritional supplies. You need the ones that are double strength or triple strength. You need to have a daily input of 1500 G/1400 C mg. G meaning Glucosamine and C meaning the Chondroitin. You may need to take 2 or 3 tablets daily to get that amount. I can't tell you how much relief I got from taking that. I didn't notice the full impact until about the 12th day. You have to allow 10 -12 days and then wow.. its there. I was having so much pain and stiffness that nothing was helping at all. I couldn't hardly walk without having to use my cane. The pain in my lower back (spine deterioration they say in that area)and my knees were the worst parts. Now I have been finding myself being able to walk without the aid of my cane. I do use the cane in between because of having to offset the imbalance that wants to hit due to the neuropathy. Because there have been so many falls due to the imbalance, it is better when walking or turning, to use the cane for balance. Other joints/bones in shoulders, hands, fingers, ankles,etc., are being helped as well. People realld DO need to have this compound. I was on it once and like an idiot, I went off. I finally got my head screwed back on and got back on it last March. Then I lost my mind again for about 2 months and felt that pain creep back in double measure and thought, "listen, ole girl, get back on that stuff and DON'T EVER come off of it. So along with my very strong vitamin regime, I take that too. Remember one thing though, yes, that strength is costly, but think of the amount of pain killers that do not work that you end up paying vs having that horrible pain. To me, it is as important to me now then many of the prescription drugs that are needed. I will continue to research for other nutrients that my body would benefit more from than the drugs that I am taking that are not making a beneficial difference.
    Sylvia
  12. shawncalhoun

    shawncalhoun New Member

    I have the same exact symptoms. I just thought I was stressed but my fists clench and my jaw snaps even with muscle relaxants. I was just diagnosed with FM and have had some success with acupuncture and facial stretching. The fascia in my legs herniate in some places and form adhesions. As my doctor said, "FM is diagnosed when we can't think of anything else". He apologizes for not knowing but the facial stretching he does helps but it hurts worse than labor.