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Nor
152 Posts |
 Posted - 02/23/2006 : 15:26:35
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I want to thank Saf, samthefish, Jim 1999, Debby and all others who contributed to the discussion on fibromyalgia awhile back. I now use the term "f" word and not the term for the syndrome since I am recovering from TMS. I had a couple of questions for all those who have be (mis)diagnosed w/the "f" word.
First, do any of you have other symptoms besides the muscle/joint pain? I've got a host of nonspecific symtoms (all tested to be normal, of course) that I tend to lump into the TMS diagnosis. They come and go along w/the muscle stuff. First a headace, then malaise, then muscle soreness, etc. Does this happen to any of you?
Next, moving away from the physical - when you say you've had success w/applying Sarno's techniques - did it take awhile? Are setbacks common?
I'm doing the books, journalling, shrinkage, etc and I have periods of weeks of normalcy when I'm sure I've licked it. Then it comes back and I can't seem to pinpoint any psychological connection. Seems so random.
I could use any encouragement or advice. I found reading your posts so helpful. Thanks in advance. - Nora |
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altherunner
Canada
511 Posts |
Posted - 02/25/2006 : 09:06:04
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I didn't have condition "f", but I had lots of muscle soreness, mostly back and neck pain. I was pain free for a year after reading
MBP, then had a relapse for 2 months, had 4 sessions of therapy, and have been better now for about 1 year. I have been using exercise, meditaion, acceptance and surrender to my life condition. |
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HilaryN
United Kingdom
879 Posts |
Posted - 02/25/2006 : 13:13:22
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I haven’t had fibromyalgia either, but I do remember that when I was struggling to get any improvement with my RSI (repetitive strain injury) I was also getting a host of other symptoms which I was sure were TMS, and I was finding them all rather overwhelming.
quote:
I have periods of weeks of normalcy when I'm sure I've licked it. Then it comes back and I can't seem to pinpoint any psychological connection. Seems so random.
Presumably you mean that you can’t see anything going on at present which might cause it. But if it’s emotions you’re not aware of which are causing the pain, then, no, you wouldn’t be able to pinpoint it and it will seem random. I know it must be frustrating to have the pain back when you think it’s gone, but I’m sure you’re improving overall and the setbacks will become less frequent and eventually disappear.
Hilary N |
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Jim1999
USA
210 Posts |
Posted - 02/26/2006 : 23:00:18
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Nor,
I'm glad that our discussion about fibromyalgia was helpful for you. Personally, I still like to use the word fibromyalgia. Since it's a diagnosis based on symptoms, rather than the cause, I don't consider an inaccurate diagnosis for me. I'm active on a couple fibromyalgia sites, where I hope that my success story will help others. On those sites, I don't think that people would take my story seriously if I said that I was misdiagnosed as having fibromyalgia. I realize that you are probably not in this situation. If it helps you to think you were misdiagnosed, go ahead.
I've definitely had and continue to have other symptoms besides muscle pain, although my symptoms are different than the ones you describe. For example, I've had some minor loss of appetite and constipation during the past three weeks. Headaches are fairly common for fibromyalgia patients, although I haven't had them much at all. It's quite common for fibromyalgia patients to have symptoms other than pain and stiffness. There's a wide variety of these symptoms.
My recovery took 5-6 weeks. Dont' worry if yours is taking longer. It can vary a lot from person to person. I did have setbacks during my recovery, but they weren't too bad. Relapses are not unusual afterward, and I've had them. The pain can get pretty intense, but I've been able to control it fairly easily.
Good luck in overcoming your setbacks!
Jim
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Nor
152 Posts |
Posted - 02/27/2006 : 05:11:48
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Thanks so much for responding, Jim. I really needed to hear from someone who was diagnosed and has a "success story". When you have a setback, what do you do to control it? How do you keep it from knocking you down mentally? I feel like Ms. Confindent when I feel normal - like Sarno and I could conquer the world single-handedly! Then I get a setback and my faith in the whole TMS thing starts to crumble. Then I come onto this forum and it really helps.
I was never formally diagnosed w/fibro. My primary physician mentioned that he thought it could be that and prescribed meds which I never take. From what I've read and heard (I also work in healthcare, which doesn't help.), it seems like I fit the bill. Of course, Sarno insists its TMS. I also fit the TMS description perfectly. So ever since then I've not persued anything in the fibro camp. I won't go to a rheum b/c I don't want to be officially diagnosed. That will not help. I only want to only focus on TMS and the psychological. Everything else has been tested and I'm well past thinking I've got some horrible disease.
Anyway, thanks so much. I found another post last night on fibro and someone (it may have even been you) said something funny about fibro - that it was a "darker, more complex, european blend of TMS" - and therefore may take longer to recover from than other forms of TMS. It felt good to giggle about all this. -Nora |
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saga
Canada
25 Posts |
Posted - 02/27/2006 : 19:25:18
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Hey Nor,
I got fibromyalgia too... and I've had a host of other symptoms. I could tell you all my other symptoms but just remember I'm telling you them so you don't develop them yourself :).
I originally went to the doctor for headaches I was having every day. Then she told me how abnormally tight my shoulder muscles were, then I developed upper back pain and neck spasms. Which has basically turned into fibromyalgia. It's funny that even though I know my brain picked it because it knew it sounded good I still can't get rid of it.
Like you, I've had some success with Sarnos techniques. Right after learning about Sarno I was good for a solid month and a half. But they have come back and occasionally I get a week or so where I don't feel terrible but I've been pretty much sufferering since January. I believe it to be work related. Even though I love my job incredibly consciously. I always tend to do a lot better when I'm on a vacation or on weekends. I also recognize this as conditioning..
Other symptoms I've had along the way: bowel problems.. urinary problems.. headaches (big time).. upper back pain.. neck spasms
It's frustrating, but I'll keep chugging along and keep trying.
At any rate, I love my new outlook that Sarno's books have taught me. I needed someone to tell me I can go out and do whatever I want without worrying about re-injuring myself. It's helped me deal with all kinds of pains that I have gotten too that normally would have lasted but I've healed in a day.
Unfortunately its a constant fight to keep my neck out of the state of spasm which is debilitating.
Keep at it Nora, you aren't alone!
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Jim1999
USA
210 Posts |
Posted - 02/28/2006 : 22:40:42
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Nor,
I don't have any magic advice to make doubts go away. When I have a relapse, my symptoms may be out of control and my emotions may be all over the place, from confident to doubting or depressed. Regardless of what's going on, I just keep doing the work: avoiding physical restrictions and treatments, thinking psychological, etc. It's not that I don't get discouraged, but what's the alternative? Give up and let my fibromyalgia come back for the rest of my life? Why would I do that?
Jim |
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Nor
152 Posts |
Posted - 03/01/2006 : 06:52:09
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| Thanks for everyone's support. I'm sure I will get better. Nora |
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davebhoy
United Kingdom
15 Posts |
Posted - 03/01/2006 : 09:32:14
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does anyone ever think that by focussing on these "symptoms" we have that we are making our conditions worse?
whenever i feel bad like when i have flu then i think, oh no it must be the cfs coming back then i struggle to diferentiate between the cfs and the flu and then once the flu is gone i am left with a relapse.
do you think we ccould be fooling our mind/body into believing that these symptoms are a sign of somehitng bigger and worse and the mind/body reacts accordingly.
could it be that by living in this fear of a relapse that we increase or stress/worry/anger, that by having that thought in the back of our minds our mind is on alert for any signs of danger? and that this makes everythign worse?
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n/a
560 Posts |
Posted - 03/01/2006 : 09:36:03
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quote:
Originally posted by davebhoy
does anyone ever think that by focussing on these "symptoms" we have that we are making our conditions worse?
Yup, that seems to be the pattern of those with TMS...It is also the whole purpose of the pain. Keep us thinking about the physical instead of what is really taking place inside will indeed ensure the pain will not only continue but actually get worse. I personally fall for this trap every single time. Sigh! |
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gevorgyan
115 Posts |
Posted - 03/02/2006 : 01:16:13
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Try to think well about future, probably you don’t at all.
Try to set up the symbol of welfare, some event that you can associate with perfect body condition and freedom from pain. For me this is my jumping on my head to a swimming pool what I love, but I have not repeated this since problems began. But I realize this frequently and it helps.
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Saf
United Kingdom
30 Posts |
Posted - 03/02/2006 : 15:15:39
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hi again,
I was diagnosed with FMS at Stoke Mandeville about 3years ago.
What a relief that was, beats insanity....
That was how the medics were making me feel.
I dont have time to list my symptoms, and right now the only one I care about is the head pain.
but they include IBS, palpitations, poor sleep, tinitus, PND, constantly aching muscles and lackof enrgy (no longr fatigue).
Loads more, but....
I havent had a jot of help so far from Sarno's ideas (althugh i still want to), or RT or any complimentary therapy (except Head massage for the head pain) or any medics.
Yes please do post if yu have actually got better from FMS. To date I dont know anyone that has...plenty with CFS/ME call it what you will. Which raises a question, are we failing as patients or are the treatmens failing us...
Thanks,
Saf |
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Jim1999
USA
210 Posts |
Posted - 03/02/2006 : 23:15:17
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quote:
Originally posted by Saf
I havent had a jot of help so far from Sarno's ideas (althugh i still want to), or RT or any complimentary therapy (except Head massage for the head pain) or any medics.
Yes please do post if yu have actually got better from FMS. To date I dont know anyone that has...plenty with CFS/ME call it what you will.
Saf,
Sure there are people who have gotten better. I suffered with fibromyalgia for 7 1/2 years, thinking I would have it for the rest of my life. Then I learned about Dr. Sarno in 1999 and made a full recovery. I never had CFS.
There are others who have posted here who also have had a lot of success against fibromylgia. Samthefish and dwindsor52 (Debby) have made a lot of progress, although they are not fully recovered. Here are a couple links in which they explain their success:
http://tmshelp.com/forum/topic.asp?TOPIC_ID=1677
http://tmshelp.com/forum/topic.asp?TOPIC_ID=1761
Kajsa considers herself fully recovered from fibromyalgia, and better than 50% recovered from CFS. She has found CFS harder to fight than FMS.
I know there are others, too, but this is a good start. Hope this helps,
Jim |
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n/a
560 Posts |
Posted - 03/03/2006 : 07:48:20
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| My doctor tried to place the diagnosis of fibromyalgia on me but I refused to accept it. Labelling ones physical symptoms as fibromyalgia means you buy into the whole physical reason for the pain and all the precautions you are expected to take as a result. In short, fibromyalgia is not a real diagnosis but merely a fancy name given to something doctors don't fully understand. |
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Saf
United Kingdom
30 Posts |
Posted - 03/03/2006 : 13:03:10
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I was never given any precautions or anything else with Fibro.
Never given any physical reasons for pain to buy into.
Think you had a bad experience there Peter.
I was just told to do as much as I could and try to increase it and that i couldnt actually hurt myself as it isnt progressive.
This seems right and it has worked....but I stil have it and still have the big problem, the head pains...
I just wish I could understand what Sarno wants me to do.
I am feeling really stupid.... |
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the "f" word
