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  • Chronic Myofascial Pain with FM and CFS

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    Old 06-12-2003, 09:01 PM   #1
    LarryPas
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    Post Chronic Myofascial Pain with FM and CFS

    Hi all,

    Knowing this board is the closest thing to a CMP discussion, i was wondering how many people have myofascial pain here. Simple difference being that myofascial is the one with trigger points. I am "lucky" enough to have both diseases, which just means my pain is consistantly horrid, it just likes to jump from place to place or add new places for a day or two. I'm exercising, but work is getting tough as my hands start to get worse. Add to that i'm 26 and i don't believe in narcotic use for chronic diseases and you can see the issue Anyway, just looking for advice.

    Larry

     
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    Old 06-12-2003, 09:12 PM   #2
    kristeen36
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    hi larry,

    ya got more of the mps than the fibro, but i get the juicier fibro problems like fibrofog, numbness and tingling, and the inability to do anything with my lobster claws some days!

    and don't even think about touching my back! how annoying is it that everyone just HAS to touch you, or even try to tickle you? one day you will hear about a savage murder because of FMS/MPS complex!

    advice...read all the entries here and all the books you can get your (sore) hands on, and try them all...you've got nothing but time i'm afraid to say. what works for me is definitely not going to work for everyone...just the nature of this horrid beast (if only it were that easy).

    i applaud your decision against narcotics. try all the alternatives first, the others will still be there if you need them.

    god bless

     
    Old 06-12-2003, 09:31 PM   #3
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    Hi. I've just been diagnosed with chronic myofascial pain syndrome as well. Unfortunately I can't take anti-inflammatories (causes my crohns to flare) pt aggravates it, there are no massage therapists near me that are familiar with this and docs say it went to long untreated so injections won't work. He told me I have 2 choices, don't take any narcotics and have no life or take them and at least have some quality of life. Are you aware of any other types of treatments I'm not aware of? Any advice would be appreciated.
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    Crohn's disease, scoliosis, chronic myofascial pain, migraines, Osteoporosis, Trigeminal Neuralgia.

     
    Old 06-13-2003, 06:19 AM   #4
    LarryPas
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    Actually i'm lucky enough to get the fibrofog (just ask my friends/parents) and dizziness. People can't believe that someone who spent time at harvard can't remember something he was told 10 minutes ago, or even sometimes makes a wrong turn going home (got a gps for that lol). And I just graduated college 5 years ago!! Oh, at the hospital they would put my hands and feet in icewater for 30 minutes and they would feel better for a few hours after that if anyone is looking for some help.

     
    Old 06-13-2003, 05:34 PM   #5
    kristeen36
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    i just read about water therapy...the old fashioned way, walking in a cold stream or lake. it used to be a remedy for migraines and it actually works! the prob with this is it can also set off a fibro attack in my lower legs...they'll ache for days after! i have to decided which i can tolerate more, the migraine or the leg ache.

    as for the fog....incredible isn't it? that is the symptom that scares my husband the most because i too am a scholar...and he kinda relies on me to be the walking phonebook/directory/source of useless but informative knowledge, and when i can't pull up my own address it's a bit freaky!

    as for massage, i won't ever try that again! i had a "spa" treatment just last weekend, and it has taken me 6 days to get back to my normal level of miserable again! i thought maybe it would help to "drain" some of the mps triggers, or at least increase my circulation, but it has resulted in torticollis (excruitating neck spasm) and a 6 day migraine, so let me know if you ever find a masseuse that doesn't create more problems and actually provides relief. has anyone tried chiro, and how has it helped? i tried it once for a period of 6 months and it really only aggravated me, but i didn't know i had FMS/MPS then either.


     
    Old 06-14-2003, 12:40 PM   #6
    LarryPas
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    Twisten,

    I know the allure of the drugs, since i was on methadone for 2 years. Two years i don't remember at all. The truth of the matter is that pain management doctors don't want to deal with us because they really are just drug pushers. And you'll become an addict for the rest of your life. Prescribed drugs kill 3x more people than street drugs.

    I have found the best way to fight pain is heavy meditation and self-hypnosis. This isn't for everybody i guess, but it's extremely effective. I also exercise those joints that hurt. It's hell, but it helps. I can't just give up and say ok that's my lot in life, i'm a pile of crap cripple. And i can't walk around in a drugged daze. I know it hurts like hell, typing this isn't fun. But there are ways to control the mind. Everything is in the mind, but western civilization doesn't press that issue it seems. If you want a list of books that may help out, tell me. I've done best with identifying with the baghavat gita however, realizing i have a choice to make. Perhaps it will help you too.

    Larry

     
    Old 06-18-2003, 09:57 PM   #7
    twisten
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    Hi Larry thanks for the info but I just don't think self-hypnosis and meditation is for me. Right now my pt is trying accupuncture and while I have no positive results yet at least it didn't make me worse. You never know I may come knocking for a list of those books yet though. Thanks again.
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    Old 06-25-2003, 11:36 AM   #8
    debabc
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    I have the really really sore spots, although no doc has told me I have MFS, I know I do in addition to the FMS that they have diagnosed. So many people seem to have the super sensitive skin that hurts to be touched, but my sore spots are deep in the tissue and you have to press pretty hard to access it. Massaging these spots sort of hurts, but it also releases the "knots", and feels better afterwards. Lately I've been having pain on both sides of my spine in my mid-back, and I can't do anything for it except to lie down (which can be a problem at work). It feels like my muscles can't hold me up. Does anyone have similar symptoms? I'm curious, because it seems that other people's symptoms are somewhat different that mine.
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    Old 06-25-2003, 05:37 PM   #9
    LarryPas
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    Debabc that's where mine started. And you truly do have CMP (chronic myofascial pain) if you have the deep tissue pain. Many doctors still don't know the difference, or even accept that they exist. Amazing huh. When mine went to the point that i couldn't live by myself (i'm 26), my parents actually flew me home to see yet another pain mgmt (drug pusher) and he just raised my dosage of narcotics. Now you may feel better, but you CANNOT use narcotics on a chronic illness. They're not meant for that and the doctors who say they are just want you high and out of their hair. My parents finally sent me to the University of Miami Pain Clinic (http://www.um-cprc.com/). It is considered the best in the world (Dr Rossamoff wrote the book on myofascial). It also gave me my life back. I was at a 9 level and now i'm at a 5-7. That's a huge difference! some scoffers say well sometimes it's only 2 points. I can operate at 7.. not at 9. And they give you your daily regiment of exercises for when you leave them. That is why i have hit 5 instead of the 6 average that was a constant 6 or 7. If you need a place to learn how to live with it, get rid of whatever walker or cane you may have, and walk upright standing tall (some days ) Then you should look into them. That goes for everyone. Deb you may have fibromyalgia.. i have both... but i now know you have CMP. I also know you should invest in a thera-cane. It's this small cane thing with balls on it which you press into the deep tissue problems and yes it hurts but you are giving yourself a deep tissue massage. After a few 30 second uses you'll feel much better for a while. I carry mine with me. Anyway, the fibro in my hand is flaring from this book, so please email me if you have any problems. It's hard to see the light, and you know what, there may not be one. But there's still the ability to shine in darkness.

    Larry

     
    Old 06-27-2003, 09:27 AM   #10
    debabc
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    Larry, thanks so much for your response, it helps to not feel so all alone in this. I have a herniated disk since Feb. which the docs say doesn't look so bad for the pain it is causing me. I'm sure its the cmp. I've been going to a chiropractor for that, and while the sciatica from the disk hasn't improved a lot, the pain behind my shoulder blade that has been hurting for about 30 years (I'm serious) has just about disappeared. I'm seeing a NUCCA certified chiro and he took xrays from the top of my head going down into the spine. It was very apparent that my spine is very skewed. Also, my head was visibly tilted and one shoulder was obviously lower than the other and tilted forward. I could see this in the mirror, but was told by my med. doc that that was normal. HA! My shoulders are now even and my head no longer tilts. Of course, I still have all kinds of pain, but that severe pain in the shoulder is gone. Since my sciatica has not improved, I checked out some books on exercises for the back and found one called Breathworks by Nancy Swayzee. It is a program that strengthens the abs and back muscles at the deepest layers, so that your posture improves. The exercises are not strenous. I started it yesterday. I'm thinking if those muscles are strong, they should be able to hold me up without straining and maybe the pain will subside. You may want to try it. OK now I've written a book, too. Thanks again.
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    Old 06-27-2003, 05:50 PM   #11
    Lucille711
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    Larry,
    Does this sound like myofascial pain to you?
    1. Thickened or hardened muscles in both thighs & lower
    legs
    2. Pain/numbness in feet
    3. Burning sensation in arms and legs
    4. Muscle/skin twitching
    5. Vibrating sensation in feet when laying down
    6. Most recently, weakness in both legs where a crutch
    is needed
    7. Vibration on both checks next to nose
    Any ideas or suggestions?
    Thank you.....
    Myra

     
    Old 06-28-2003, 06:03 AM   #12
    LarryPas
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    Lucille,

    It sounds like it can be. I'm no doctor I do know they wouldn't let us have any canes, walkers, or other instruments in Miami, because the main goal is to use the weakened body part so make it strong again.

    For you and deb, i have a great book that explains everything and there's an exercise book that compiments it. The first is called Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition). Thats the facts according to these two doctors, and it goes over things the best of any book out there, though it tends to prefer fibro at times. The workbook is great though. The only thing we can do for our condition is be careful, lift correctly, walk correctly, and stretch. This book will help: The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief.

    I hope i've helped you guys out. And don't limit yourself to these books if you don't want to. Any book that has you exercising is great.. oh and the thera-cane is a great thing too.

    Larry



     
    Old 06-28-2003, 07:30 AM   #13
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    Hey Deb,

    Read the posts under BACK PAIN here on the fibromyalgia board. Youll be surprised to find out youre not the only one with this weird pain.

    We've been discussing this particular pain , and others with fibro have been experiencing it. I have an appt with my doc next week and thats one of the things im bringing up. The pain starts midway the spine, and it gets so severe you just dont know what to do for it.

    Nothing seems to help, its not muscle pain, its the spine itself.

    Hope youre having a great weekend,
    Jen

     
    Old 06-28-2003, 08:34 AM   #14
    LarryPas
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    I thought it was my spine, but it ended up being my hip. All the muscles to your leg go through the same spot as the sciatic nerve. with cmp you're going to have a shortened and thicker muscle so there's less room and it pushes on the nerve. That affects the deep tissue there and ALSO on the back usually. I'm lucky enough to have it moving into my hands now. Every joint. Myo means muscle, but we're not talking muscle pain. We're talking about the thin film around muscle that covers every organ, bone, etc. Thats why it feels like bone pain. At least that's what i learned during my month in the hospital from the best doctor on the subject. It's even in the cmp and myofascial book i had in my earlier post. It really defines it well. But there are NO TRIGGER POINTS in fibro. If you have them it's CMP. You may have both, but that's just the definition of the two. Many people don't know that including the docs that just consider them the same. Anyway.. Off to exercise.. gotta lengthen those muscle bundles in my hip

    Larry

     
    Old 06-28-2003, 04:11 PM   #15
    Lucille711
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    Larry,

    I can't believe that you are only 26 yrs. old. That is such a bummer to be so young and have to deal with this awful pain. My heart goes out to you. How long have you been dealing with MPS and the fibro too? If I hear of anything interesting that deals with either of those two subjects I will certainly let you know.

    Thanks so much for your helpful advice. I went a good part of the day today WITHOUT my trusty old crutch. I didn't have to go to work but I did manage to clean my house and get some laundry done. (I have to go downstairs for that.) I forced myself to do these things and I got through them. Now I can sit back and enjoy my clean house, for a few days anyway!

    I have written the book titles down and plan on getting the two books that you recommended. Also, I like the idea of that thera-cane too. Whatever helps, I'm game. Already you have made more sense than some of the doctor's I've seen. Thank you so much.

    Please let us know how you are doing. I look foward to hearing from you again.

    Myra

     
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