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View Full Version : They have finally told her what's wrong (WARNING: May contain self pity)



Captain Scarf
02-28-2008, 10:14 AM
Well,

My lady finally got told what is wrong with her (after only a year and a half of tests and delayed appointments)

It is Fibromyalgia. (some sort of neuropathic illness which brings fatigue, joint pain and means she has to use a wheelchair - which she has been doing already)

Bad news: There's no cure. Some relief is possible through physiotherapy and drugs - and it can go into remission.

I'm going to stop before I start whining.

anyone else know anything about this condition?

Siddow
02-28-2008, 10:22 AM
All I know* is: eat protein. Lots of it.

Steak and eggs for the gal! Yum.


*'know' is not from scientific research or personal experience, should be replaced with 'heard'. But hey, it's worth a shot, eh? Pass the peanut better and ribeye? Either it helps or it tastes good. Win/win. :D

JLCwrites
02-28-2008, 11:36 AM
I've had two relatives who had it. But not to the point of needing a wheel chair. It seemed to arrive during very stressful times in their lives. Then, after the storm, they were fine. (This was after a couple of years suffering from it.) It does seem to be some sort of unexplainable condition. But many health providers will offer classes on ways to make it more bearable. In the meantime, I will be sending you and your wife some positive vibes. I hope she is better soon!
:Hug2:

Voyager
02-28-2008, 11:40 AM
I have a friend who suffers from fibromyalgia. She was in so much pain at one point that she was confined to a wheel chair, but she got better after changing her diet and doing all she could to lessen the stress in her life. Now she still has bouts of pain that leave her unable to move around as well as she'd like, but she has more good days than bad now that she's learning to live with it and take better care of herself. At first she felt selfish until she realized that if she took care of her own needs first, she could better care for her family and if she didn't, she was no good to anyone in when she was in so much pain. Take good care of her.

Cassiopeia
02-28-2008, 11:50 AM
Well,

My lady finally got told what is wrong with her (after only a year and a half of tests and delayed appointments)

It is Fibromyalgia. (some sort of neuropathic illness which brings fatigue, joint pain and means she has to use a wheelchair - which she has been doing already)

Bad news: There's no cure. Some relief is possible through physiotherapy and drugs - and it can go into remission.

I'm going to stop before I start whining.

anyone else know anything about this condition?yes, I've lived with it since 1989. Sometimes it consumes my entire body, sometimes it's just an arm. Sometimes it doesn't bother me at all. Proper nutrition, mild exercise and being in the warm sun helps tremendously. I go to a tanning bed sometimes for 8 minutes and it seems to really sooth it. I've never been in a wheel chair...but I have had in the past, spent several days in bed due to the immense fatigue and pain I get in.

HOwever, it's been years since it was that bad. It really is important and as odd as it may sound, to keep in mind this one truth. Laughter really is the best medicine. :) *hugs to you and your sweetheart* It will get better.

Shady Lane
02-28-2008, 05:10 PM
I don't know if there are ticks in the UK, but since Fibromyalgia is clinically diagnosed, will you please make sure she gets a Lyme Disease test if you live (or have traveled) anywhere with ticks? They thought I had Fibromyalgia (even though I'm sixteen...) but it was really Lyme Disease, which IS testable and IS treatable. Symptoms are a lot the same. Please get the test...it's a simple blood test, no problem.

HeronW
02-28-2008, 05:52 PM
Google it, look for support groups in your area, check out clinics that specialize in it, seek a quieter-less stressful lifestyle, don't ever give up!

dolores haze
02-28-2008, 06:46 PM
My mother-in-law has fibromyalgia. She has lived with it for many years, and uses a lot of naturopathic remedies. These help, but do not cure. She has to spend a lot of time resting. Walking is getting gradually harder and harder for her.

You're in the UK. Here in the US I've seen commercials for a new medication for fibromyalgia. I can't remember the name of it. Does anyone know the name of it? There are lots of studies being conducted. Ensure your lady's doctor is keeping up with the latest research.

And now at least you and she knows what ails her. My MIL went years being told it was all in her head, and being told she was just lazy. The woman who raised ten children being called lazy!

Good luck to you and your lady!

Stew21
02-28-2008, 07:34 PM
One of my mom's very good friends has this. She has had some success and relief though I am not sure what methods have helped. I'll ask her and let you know as soon as possible what Mom's friend has done to make her illness more bearable.

Hugs to you and your wife.

I'll PM you with any information I get from her.

Captain Scarf
02-28-2008, 09:46 PM
Thank you all.

It may well be made worse by stress.

She is an Engineering student and often struggles with the course (even without health problems)

K1P1
02-28-2008, 09:59 PM
Fibromyalgia is one of those collections of symptoms that they gave a name, but it's not very well understood. From my reading, it is worthwhile to seek relief through a variety of treatments, including alternative therapies, diet and vitamin and mineral supplements. Its would be worth it for her to see an osteopath (and/or a chiropractor and/or medical massage therapist) to deal with spinal or neck issues, which can exacerbate the condition, because they make everything more painful. Massage can also be extremely useful for relieving stress, as can yoga, and biofeedback therapy. None of these will cure the underlying problem, but they can help the body re-learn how to respond to pain. Pain causes stress, and stress causes muscle tightness and makes the pain feel worse. The neural system learns to overreact to the pain, causing more pain, causing more stress, and you can see that it can spiral out of control. Yoga (or any other meditative practice) and biofeedback can help you teach the neural system not to react to the pain, so that it's easier to control.

I know I sound like I'm touting this, but it's something I've been working with a lot dealing with my daughter's constant migraines. Any condition that creates pain has the potential to get way out of control or to be controllable, based on the person's nervous system response to the pain. Since there are so many aspects of conditions that cause chronic pain that can't be controlled, learning to cope with it gives the person in pain at least something she CAN control, without necessarily turning to medications that will sedate her and make it impossible to think.

Also, she might want to consult someone with a specialty in environmental medicine (don't know what you call that in the UK), who can look for any sensitivities to chemicals/foods in her diet or environment.

Old Hack
02-28-2008, 11:50 PM
I have it too. When it flares up I take Imipramine, 10-20mg before bed. That works, but I barely read or write when I'm on it (although I do lose weight, which is a veyr nice side-effect to have). Otherwise, limited alcohol, caffeine (it's closely connected to poor sleeping habits, and really flares when I don't sleep well), relaxation when required, good diet, and lots of excercise really help.

The pain's a bugger, though, when it's not under control.

Cassiopeia
02-29-2008, 03:28 AM
Thank you all.

It may well be made worse by stress.

She is an Engineering student and often struggles with the course (even without health problems)There's that word...Stress. Yep that is what flares mine up. Which is why when I deviate from my routine of eating well and moderate exercise it flares up. I have to manage my stress to manage my Fibro.

Honestly, even going for a walk outside, and remembering the world is a great place and reconnecting with what is real heals so much for me. I always tell my kids when they get all hyper stressed, "listen would you go hug a tree?" They laugh and just chalk it up to me being nutty but having trees and plants around me, reminds me there is something tangible in this world I can count on that I love.

Susie
02-29-2008, 07:39 AM
Hi, Captain, I'm so sorry your wife has that and sure hope that her doctor can find something to help her. My prayers and thoughts are with you both.