Fibromyalgia help please

binny

do something that MATTERS!
Joined
Mar 14, 2001
Messages
14,933
I have fibromyalgia and most days I do just fine. I think I have a really mild case.. some days though, like today, I really struggle.

My worst "hot points" are in the middle of my chest, right between my breasts. That makes it hard to breathe when it acts up and hard to move at all.

Its very depressing and hard to deal with this. I am trying so hard to work out daily and keep active but on days like today I cant manage it no matter how much I force myself :(

I need some ideas on how to deal with this. Has anyone ever been able to find anything that really helps them?


Thank you.
 
binny, :hug: I do not have any solution other than what I just read about it online.

EXERCISE
A program of stretching and gentle exercise is essential for FMS patients. A physical therapist or exercise physiologist can help you put together a program that will be beneficial in maintaining muscle tone and a reasonable level of aerobic fitness. Walking, stationary exercise equipment, pool therapy, and stretching seem to be the most suitable activities for the FMS patient. The key is to start slowly and increase your exercise time and level carefully.
There is increasing evidence that a regular exercise routine is essential for all fibromyalgia syndrome patients. This is easier said than done because increased pain and fatigue caused by repetitive exertion makes regular exercise quite difficult. However, those patients who do get into an exercise regimen experience worthwhile improvement and are reluctant to give up. In general, FMS patients must avoid impact-loading exertion such as jogging, basketball, aerobics, etc. Regular walking, the use of a stationary exercise cycle and pool therapy utilizing an Aqua Jogger (a flotation device which allows the user to walk or run in the swimming pool while remaining upright) seem to be the most suitable activities for FMS patients to pursue. Supervision by a physical therapist or exercise physiologist is of benefit wherever possible. In general, 20 minutes of physical activity, 3 times a week at 70% of maximum heart rate (220 minus your age) is sufficient to maintain a reasonable level of aerobic fitness.

http://www.ukfibromyalgia.com/support_pages/support-frames.html

and,

Exercise regularly. At first, exercise may increase your pain. But doing it regularly often decreases symptoms. Appropriate exercises include walking, swimming, biking and water aerobics. A physical therapist may help you develop a home exercise program. Stretching, good posture and relaxation exercises also are helpful.

http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=9

You are doing what you can and that is a good thing. Don't give up!
 
binny ((MORE HUGS)) as a parent of a JRA child I just want to let you know its OKAY, really OKAY to take those days off when you need to. i admit to not knowing your disease in and out like I think i know my DDs; but i do know in her case if it's a bad day its just that and tomorrow is a new day. on those bad days be ok with doing 10 mins of yoga or stretching or whatever you can do, knowing it will help you feel better - and then be ok with yourself on the days you need to pass

seems like there was a WISHer who posted with fibro back when? anyone remember who that was??

do you have water classes avaiable? our local YMCA offers arthritis friendly water aerobics, just a thought. have you checked with your local Arthritis Foundation for classes and/or help? www.arthritis.org

hang in there -- you have a healthy attitude, keep your spirits high. be sure to give yourself LOTS of credit for those baby steps, no matter how small they seem
 
thanks guys today is a better day :)



Yesterday was a very bad day for me. Along with the pain comes depression and I know that it wont last long but honestly that doesnt help much when Im in the midst of it. I want it to. I want to say in a strong voice " this too shall pass" and believe it. But when youre in the middle of it.... I dont know, I just cant.

LIke I said most days Im fine and I can work out like normal and feel normal but then those few days hit and bam.


I sent this to my dh last night in an email so he could understand it a little better.


WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder."

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies. "
 



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