Fibromyalgia / CFS / ME Support Group ?

Is it really for a friend?

I was in a support group for approximately 2 weeks and it nearly pushed me over the edge. They just moan and bitch and compare pain levels and medication.
 
LJ1234 said:
Is it really for a friend?

I was in a support group for approximately 2 weeks and it nearly pushed me over the edge. They just moan and bitch and compare pain levels and medication.
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Its my mom in law, she has Fibromyalgia. But she is okay at the moment. Just learned to live with it. A support group should be more to encourage each other and share things they find to help them cope I would think. She had it for many years.

My wife has ME/CFS, also could never really find a good support group.
 
I was diagnosed with it in 2003 by Dr Potts, the rheumatologist in PE. You have no choice other than to learn to live with it and still have a good life.

Key is getting a good night's sleep, then you can face almost anything that life throws at you. Second is to keep active. Exercise is vital to keep the pain monster below the surface. Walking daily and stretch exercises keep the muscles supple and release those feel good endorphins.

I wrote a blog some years ago. I will find it and post it here.
 
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LJ1234 said:
I was diagnosed with it in 2003 by Dr Potts, the rheumatologist in PE. You have no choice other than to learn to live with it and still have a good life.

Key is getting a good night's sleep, then you can face almost anything that life throws at you. Second is to keep active. Exercise is the vital to keep the pain monster below the surface. Walking daily and stretch exercises keep the muscles supple and release those feel good endorphins.

I wrote a blog some years ago. I will find it and post it here.
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She is on sleeping pills for years now. Can't sleep without it unfortunately. For her age she is quite active, but obviously getting old and the sickness being very bad sometimes with lots of pain. Also get bad Vertigo. But yeah, her health is not so great anymore, but despite that she is not someone that just sits still and feel sorry for herself. In fact, there are people who go through much less than her but she will put their struggles above her problems and pain and help where she can no matter how much pain she has.
 
RedViking said:
She is on sleeping pills for years now. Can't sleep without it unfortunately. For her age she is quite active, but obviously getting old and the sickness being very bad sometimes with lots of pain. Also get bad Vertigo. But yeah, her health is not so great anymore, but despite that she is not someone that just sits still and feel sorry for herself.
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Xanor SR (slow release) is a better option than sleeping tablets. It is actually for anxiety but helps with sustained sleep. A weighted blanket also helps promote deep sleep.
 
Easier to find support groups on Facebook. May not be local but a support group none the less. When I had spinal MDR TB I joined a support group and they were helpful and in turn I could also offer support for what I had been through.
 
What I learned over the past years living with Fibromyalgia. What worked and what didn't.
  1. DO see a specialist i.e. a rheumatologist or neurologist as soon as you can after being diagnosed. There is a pain blocker out there...they just need to find the one that works for you.
  2. DO NOT...I repeat...DO NOT...go into chat rooms or forums with other fibromyalgia sufferers. If the pain doesn't make you depressed, the chat rooms sure will.
  3. DO NOT spend a fortune on supplements. They don't work. The only supplement that I found helpful was Magnesium. It helped with muscles repair and when taken before bed time, will help you sleep. A vitamin B and B12 injection will help with the energy levels.
  4. DO get serious about quality sleep. The pain tends to affect your sleep patterns. The medication (like Trepiline, Xanor SR and Tramacet) will help you fall asleep. If you are a light sleeper get some wax earplugs and cut them to a size that feels comfortable in your ears. That way your partner's snoring or other noises will not disturb your sleep.
  5. DO NOT stop exercising. If you aren't exercising... start slow. I have found immense benefits from a brisk walk each morning. It cancels out the lethargy brought on by the medication and the endorphins makes you feel good and acts as a pain reliever. You will also strengthen your muscles and the spasms would be less painful.
  6. DO laugh more and have fun. I met a woman a while back that have gone into mourning about her health...that just makes me depressed hearing it. DON'T stop living.
  7. DO NOT use fibromyalgia as a way of getting out of activities. That makes you a victim. Rather do as much as you can when you feel good. You often underestimate your capability.
  8. DO NOT stop taking your medication as soon as you feel better. I learned this the hard way. You are not cured...the pain is simply blocked. If you stop taking your medication you WILL wake up with an elephant sitting on your chest and it will take you many months to gain the ground you have lost.
  9. DO take up a hobby. All work and no play...and all that. We live in a stressful world and stress worsens your condition. Be creative, play a musical instrument, play a sport, sing, dance...do something that makes you happy and reduces your stress levels.
  10. DO not overdo things when you feel well. You will pay the price for it the next day.
  11. DO NOT allow negativity into your life. That includes unsupportive doctors. There’s no room in your life for a physician, friend or co-worker who thinks fibromyalgia syndrome is all in your head. That just makes you feel foolish and guilty for being sick and increases stress, which is a pain trigger.
  12. DO listen to your body. Take time out when you need it.
  13. DO NOT forget to always take a jacket or sweater with you where ever you go. Cold makes your muscles tense up and can send you into a downward spiral.
  14. DO NOT underestimate the value of a good massage. It will do wonders to your body and your soul.
Lastly, two years ago a new medication came onto the South African market. It is called Palexia SR. It is a combination tablet that works for both general and nerve pain. Medical aids don't cover it and it is expensive, but then again, you can't put a value to being relatively pain free.
 
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