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Old 07-09-2002, 07:31 PM
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Hello Everyone,
I am amazed at how many people are suffering with FMS. Alot of people do not realize that everyday your body feels like it has the flu. A simple squeeze on the arm or a tight hug can be painful for me.

Someone asked about muscles cramps in feet...I do get them too and in my calves and forearms too! I try to make sure I eat potassium rich foods, potatoes, bananas, etc. I also take Stress tab vitamins.

I have used a "tens" unit before...it does work till your muscles get used to the unit.

I was wondering if there is any area of the country that is okay for FMS people. Arizona?

Take Care everyone and maybe someday they will find a cure!

janet
  #32 (permalink)  
Old 07-09-2002, 07:42 PM
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Fibromyalgia

Wow, so nice to know I am not alone. I was officially diagnosed about 9 years ago. Two very nasty pregnancies and during my second I was isolated with a "mystery fever" three weeks before I delivered. I suffered major fatigue following the birth of my second son, but being a busy new mom and working full-time as a social worker I did not look after myself. The fever which never seemed to go away took a nasty turn for the worse and I ended up in hospital with a headache and lower back pain like no other (and I have always been a "headache specialist"). Physicians had dismissed me as "a headache", but what they could not explain were the other nasty symptoms like the joint pain, hair loss, bleeding gums, and a doubly enlarged spleen. My blood tests would always come back normal (maybe a little low in vit. B12) until they did a virus scan which showed cytomeglovirus which is a form of mononucleosis. I ended up quitting my job, being couchbound for about a year and a half before I could even consider being employable. I changed careers (computer operator) and have only been able to work part-time. I manage my energy like money. I have so much to spend, so how will I spend it? I have tried all kinds of exercise with the best one being Karate which helped with stretching and concentration. Now I do Yoga for Wimps. However, the post-exercise fatigue takes days for me to recover. Now comes the weight gain. My favorite vitamins are B6, B12, Folic Acid, GNC's Women's Mega Vitamin. I've also had success with the herb Gotu Kola and take Bee Pollen and Royal Jelly when I can afford. The internist who diagnosed me has me taking Elavil (amytriptelne) in a low dose of 30 mgs (helps with the insomnia and poor sleeps) to keep the neck and back muscles from tightening and causing headaches. It has also helped virtualy take away the facial pain as my TMJ joint checks out great and my bite is perfect. The side effects to quite a while to get over, but I'm glad I preservered. I take Zomig for my 5 alarm migraines, and can usually stave off a biggie by taking Advil Liquid Gels (I try not to think of what my stomach is going through). I tried arthritis meds, but could not tolerate them. I also take Flonase for my allergies and to stave off the sinus pain headaches. Seeing a physiotherapist has helped me tremendously in teaching how to give myself a back and neck massage with tennis balls as well as learning exactly which type of headache or pain I am having and making sure I take the right med. For years I was just one big confused ball of agony. I would be chowing down 222's with codene and Sinutabs daily before I sorted out my headaches. I have also learned about referred pain and where to massage. I do try to take the least amount of meds. possible and treat pain points with cold packs, or warm pack, whatever will work. I have shied away from chiropractors as my neck just seems too "brittle". I also had a deep muscle massage that sent me reeling in pain for days thinking I had been put through a meatgrinder and it triggered a 5 day migraine.
I am also sensitive to climate changes. Not much I can do about that except take a little Advil. Where I live it can be possible to experience all four seasons in a day lol!

MOST IMPORTANT! Through counselling I have learned to give up living up to the lofty standards I had set for myself, and what got me over the hump of depression over my "lost former self", was to be good to myself and not beat myself up over brain fog, being unable to commit to or join in everything, just being unavailable at times. Keep a good sense of humor, set up supports and don't exhaust them. Work a little, rest a little. It's hard, but try not to get discouraged you will find what works for you through this journey. Pray for a cure. GOD BLESS!
  #33 (permalink)  
Old 07-09-2002, 11:09 PM
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Hi everyone,
I'm so glad to read you all and see that I'm not the only one having all these pains.. as for husbands, mine thinks I'm simply to lazy when he sees that I cut corners to do things, and it's pathetic but I wish he could get sick too just to see how it's like to get pains and not function normally! Any way he's another story all together. At least my 6 kids help me a lot.
Thanks for all the site you gave and I shall try to find more to take care of myself. I live where good and comprehensive doctors are hard to find.
I was put lately in a hormone therapy, at 52 I thought my bones were becoming brittle and thought that the hormone therapy would help. And it doesn't seem to do so because mostlikely the underlying problem is Fibro.
Thanks again all of you bye
  #34 (permalink)  
Old 07-10-2002, 04:59 AM
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Caponata,

Sorry your hubby doesn't understand your health problems. With 6 children I don't think the word "lazy" would fit you. You must be "amazing". ;-)

What the heck is wrong with cutting corners to get a job done? I would love to hear about them.

I see you live in France, I thought the medical field was more progressive there and were open to try new things? At least that is what I have read or heard.

I wish you a great day, painfree, and keep smiling!


janet
  #35 (permalink)  
Old 07-10-2002, 12:39 PM
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I too, have fibro. It raised it's ugly head in 1990, after the birth of my two daughters and an extremely stressful time in my life.
I see a pain specialist. I have found that Ultram helps me the most. I know that when I excercise and stretch, I seem to feel better also. The release of all those endorfins. It is just finding the time and will power to do that. I also use a hot tub. Your doctor can prescribe that and it can be taken off your fed. taxes if you meet the deduction. Also, the herb SAM-E helps. Doctors in Europe prescribe this. It is very pricey in the U.S.
Researchers have discovered that Fibro is hereditary. I have two cousins that have been diagnosed with it also.
Watch the weather also. When it is to storm, and the barometer drops, watch out!!! Pain. That is when I use the hot tub the most.
Hang in there. There are lots of us out there!
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Old 07-10-2002, 12:46 PM
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Several things I forgot. That is part of the fibro symptoms, but not this time. I take Elavil at night to help me sleep. That is essential, because if you can't sleep, the pain seems worse, which aggravates you, which causes more pain, which causes less sleep. SEE! It is a vicious circle. Be sure to ask for help with your sleeping at night.
I have had massage, and if you make your masso-therapist aware that you have fibro, and where the worst pain points are, they should take caution in those areas. If they don't know much, and I can't imagine that in this day and age, educate them as much as possible. They should want to know.
Another therapy my pain specialist wanted me to try is water therapy with physical therapists. If you have insurance, that might help also. I couldn't arrange the time for that.
Plus, Europe seems to be on the cutting edge of this disease. Make sure your doctor is up to date. There are many web sites and publications on fibro now. Check a search engine and check your local library.
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Old 07-10-2002, 12:56 PM
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Dear Lifestar,
I just read your posting on trigger point injections. That is the first thing the pain specialist did with me. I recommend it. I haven't had them since the first injection in each spot. That has been six years.
You can actually feel the tension, knots, etc., let go. They quiver. But relief.
Be brave and go for it. It is amazing how much better you feel after it is done. It is not a cure all but along with sleep, it is a start, especially if you are not getting any relief or are so fed up with pain you are ready to try anything.
  #38 (permalink)  
Old 07-10-2002, 02:55 PM
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Fibromyalgia

Well, I cannot believe what a discussion we all started! Talk about a lot of people being affected by Fibro and other related illnesses.

To ladyinmaille: Yes, a jacuzzi is very beneficial. We had a new home built last year and it came with a jacuzzi tub so I got a real blessing there! However, did you know that Conair (they make hair dryers, curling irons, and other like products) sells a device that you can put in your regular tub to turn it into a jacuzzi type tub? It's under $100 -- in fact I think I saw it advertised for about $50 -- and you put it in the tub just before you get in, turn it on, get in and enjoy! It's a portable device that you just remove when you're done with it. And yes, if you mention it to your doctor and he puts it in your records and/or writes a script for it it is indeed tax deductible.

SOMETHING IMPORTANT: Sorry to change tracks so quickly, but did you all know that even simple aspirin or Motrin that you buy at a store is tax-deductible? It all adds up towards the percentage of medical/dental/eye, etc. expenses you can use as a tax deduction. So save your WalMart receipts, ladies! Even contact lense supplies and simply anything (cough drops even) are in that category. Anything health-related, no matter how far-fetched it may seem.

Back on track: Yes, I did win my disability claim! But it took getting an attorney and almost 5 years to do it. Oklahoma is very backwoods about certain things. However, during the time my claim was pending I kept track of the Circuit Court decisions and Fibro and related illnesses have now been officially recognized as disabling illnesses. So there is now much more hope. But you definitely need an attorney. Paying the percentage is well worth it! Plus they are your attorney for the life of your claim, so if you ever have to be re-certified they're right there with you. (Unless, of course, you change attorneys.) But keep in touch with your attorney every few months via letter, documenting any medication changes, symptom changes, and things of that nature. This way, if and when you have to be re-certified, your attorney has up to date info on how you've done over the past few years or so since the initial award. The key is being persistent! Don't give up! That's what the Disability Board wants you to do. You will get upset and frustrated and angry at what they mail to you and the hoops they make you go through, but don't give up! You will win in the end, and it is worth it, believe me! Yes, I wish I could work at what I did before -- I loved it and miss it -- but I simply cannot. I even tried after I filed my claim in an attempt to "mitigate (minimize) my damages" but was too ill to work more than a very short period of time. (I would not do that again -- it can screw up your case, even though my intentions were good and no fraud was involved. Fortunately the judges realized why I did it -- I had worked for attorneys for nearly 20 years -- and so I was simply trying to do what I thought was right and to show I was not a dishonest person that just wanted to lay around and get paid for it.)

Now to caponata: So you live in France! Please do not think me rude, but are you French or an American living there? My husband and I had the pleasure of spending three years in Europe and thoroughly enjoyed it. We were about an hour from the French border near Saarbrucken, Germany (my husband is in the Air Force). What a beautiful place!

I pray for all of you people here that you will find the right treatment you need and get some relief from your pain and other disabling symptoms. It is a very frustrating thing because many times we don't look ill and I invariably get glared at when I pull into a handicapped spot at the store because I am just 47; look about 30 (just like my mom did for years!); and only limp occasionally due to left knee and hip problems. But we have to move past that and go on from there. People don't understand what's involved with Fibro and related illnesses until they or a loved one experiences them.

Please keep the questions and suggestions coming, and thanks so much for all the wonderful support and information! It helps me immensely and I hope it is that for you.



I love cats!!

Blessings and Prayers!!!

__________________
Carie A., Oklahoma City
  #39 (permalink)  
Old 07-10-2002, 03:29 PM
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So much information an inspiration

I'm going to have to print this thread out and re-read it and save it for further use. This is wonderful advice we are getting. I remember someone saying something about hugs hurting and they do. Isn't that just awful. Not being able to give big hugs. But little soft ones are nice, too.
  #40 (permalink)  
Old 07-11-2002, 08:08 AM
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fibromyalgia

I have had fibromyalgia for a few years now. My mom also has it. I have been taking Vioxx for a few years and it has been working. But, now i've been having more pain. Especially when the weather changes like right before it rains. My doctor has now started me on Neurontin. I take it three times a day. It is not a drug specifically for fibromyalgia but it has been used to manage pain. It really works. I still have pain occasionally in my legs, but nothing like I was having before. I've also told my mom about it and she is taking it. Maybe you could ask your doctor about it? I've noticed that getting the proper amount of sleep really helps also. Good luck.
 
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