Fibromyalgia, anyone?

[Soulwings]

Hey, I was wondering if there are any people out there who have been diagnosed with fibromyalgia? My pain started in June after a very stressful week in the hospital, although the fatigue has been going on for years. I was tentatively diagnosed in July and have been living with it ever since. I know that's not a long time in the grand scheme of things, but I just wanted to know your experiences with that - or similar illnesses, really, anything that has to do with chronic pain and/or fatigue.

My main questions are:
- how do you cope knowing you have a chronic, and in some cases, debilitating illness?
- what are some ways that you've found to stay positive instead of getting bitter and angry?
- any tips or hints on how to find a good doctor would also be appreciated; my current one does not listen to me and has zero bedside manner, but refuses (or can't?) refer me elsewhere. I have yet to see a rheumatologist for the pain and to the best of my knowledge my doctor has not ruled out lupus, MS, or even Lyme disease, even though he says that he has "seen nothing that would hint that have any of those" (bah on him ).

And also, any encouragement or support you can offer would really be appreciated. I may sound like I'm coping with this well but I'm not - it's to the point of me needing to go on disability but aforementioned doctor does not see it as being that bad. I just started Lyrica after being on 1800mg of Neurontin (gabapentin) for 3 months with no relief.

Thanks for the time spent reading this. God bless.

 

[Lily76_]

We have never been diagnosed with it as such but we think we have it .
When we went to see a dr about she said we where feeling tired and in pain because we are overweight and that we need to lose weight. witch we are trying to do ...we dont get any painkillers or medication from our dr because she says we dont have anything wrong with us apart from needing exercise and eat less .
But i can only exercise when am not in pain and that is hardly ever.
Sorry to whine in your post.
Keep looking for a dr that will believe you it may take time and the waiting is hard but you will get there in the end
Am glad that you have medication or at lest some

Asphyxia

 

[Tenkuh]

I was diagnosed a few years ago after a very serious car accident on the interstate and another one which happened within a few months of it on the highway. Amazingly I survived both accidents without any serious injuries (meaning, no broken bones or internal injuries, etc... only had a few bumps and bruises and serious whiplash right after the car wreck). Despite not having any serious injuries, I understandably had serious "muscle pain", but even though it eased up some, it never really went away. I was later diagnosed with fibromyalgia.

It can be really hard finding a doctor who is knowledgable on fibromyalgia. I have yet to find one. The doctor who diagnosed me was very good, but he moved, and I have not found another. Most doctors brush off my complaints and treat me like I am exaggerating things. I don't think they understand how bad it can hurt.

I've since developed my own regimine that has kept my fibro under control. The pain is still there, and some days it is worse than others, but it is no longer debilitating and I can actually go enjoy life like a normal person. My regimine consists of stretches and aerobic exercises with zero weight exercises. I try to stretch in the morning and night, and I do aerobics about three times a week for thirty minutes. I try to walk every day for about an hour, though sometimes I miss cause of other responsibilities. It sounds like a lot, and you would think it would make the pain worse, but it doesn't. It actually makes it better. The pain is only mild now, so try an exercise regimine. Start out slow, and then build up to something you can handle.

I'm not even on any meds for fibro anymore. I'm fine... so long as no one touches my pressure points or my feet & legs.

 

[JuneHamilton]

Yes, I also developed FM as the result of a long-term emotional stressful period of my life (several years) at work. It's well known and medically documented that long-term emotional stress brings it on along with possible predisposition (hereditary and/or Type A personalities).

No relief in sight except quit and that wasn't happening because I needed my job. Fight or flight mode for years. After FM became so bad, I had to hang it up. However, it was deemed that my job aggravated my health condition so that was a blessing. If you can call it that.

I have a terrific Rheumatologist (specializes in FM) and I've been through different medications and had to discontinue most of them due to side effects. I'm going to begin trying some of your suggestions. THANKS!!!

It's sure nice to find a Christian place to land.

 

[bbbbbbb]

I have had fibromyalgia for five years now although I suffered from insomnia prior to it. One thing I have found to help is a good support group. I am one of the few men in my group, but the ladies have been a huge resource for me in finding ways of coping.

Different meds work for different folks, but get a doctor who will work with you to find some meds that actually help with the symptoms. It is a trial and error process, so be patient. What works for me is gabapentin (Neurontin), Cymbalta, and temezapam for my sleep.

Exercise also helps. I look at it as a means of getting my mind off my fibro pain at least for a time. Exercise in warm water and hot tubs helps a lot. God then took five years to open the doors here for me.

Pray for Chinese Christians. God is greatly blessing as they endure circumstances that leave me feeling blessed that I only have fibro to worry about.

I will be praying for you all.

 

[Treasurer]

My main questions are:
- how do you cope knowing you have a chronic, and in some cases, debilitating illness?

After 40 years of migraines and 5 years of diagnosed fibromyalsia; I cope the best I can, lol. I had to learn to quit making it a god in my life. Once I took that power back and placed it in the real God, it got easier. I found there is joy everyday and in every situation. Joy is like our belief, it is not based on how we feel. It is based on the knowledge of who God is and who we are in Him. And that is joy. I know I wont always feel pain, one day I will be made new. And that is hope. And if we have hope we can make it thru anything.

- what are some ways that you've found to stay positive instead of getting bitter and angry?

I never got angry with God. I got mad at people who thought they had the answers to all my problems. And with doctors who thought they were god. I finally learned to just nod politely and not take anything personally. They dont know or understand. And that is ok. Perhaps one day they will see that only God has all the answers and all the power to heal.


- any tips or hints on how to find a good doctor would also be appreciated; my current one does not listen to me and has zero bedside manner, but refuses (or can't?) refer me elsewhere. I have yet to see a rheumatologist for the pain and to the best of my knowledge my doctor has not ruled out lupus, MS, or even Lyme disease, even though he says that he has "seen nothing that would hint that have any of those"

I have gone thru a lot of doctors. Keep in mind they work for you. They may not know it but you do. Might I suggest interviewing your doctors? Since you allow them authority and power over your health, shouldnt you have a say so in it? And I have found people love to talk about themselves, so while you are in the waiting room for hours you can ask other patients questions about themselves and what the doctor is doing for them, and has it helped.

I finally decided I wasnt going to take 20 pills a day and told my doctor I was only going to take three pills. Mix and match any way you want, but all you get is three. He obliged. Just be strong and know what you want, you will find your way.

 

[catwoman61]

Im pretty pro active and im going to see a rhumetologist in august . I had to take the step to see if that is what I have . I know I am in constant pain everyday and have tremendous anxiety and deprssion and i think that starts when the pain starts up everyday . Somedays I hurt all over and Im just so tired and I need a dr to tell me what this pain is and from what I have read it is most def the fibromyalgia kicking in .I know when I get aggrivated it seems to get worse . I also have gone through alot of drs too . Yep I must say I agree I dont want to be taking 15-20 + pills a day and be pro active in your healthcare . always always be proactive . I never get angry with God , I know that God is still in the healing business and eventually or prayerfully God will heal me .

 

[grandma dolittle]

I have had fibro for many years. My doctor is a DO and he was the one who pin pointed the cause of my pain. I took different meds, but the one that works best for me is Cymbalta. After he told me about fibro, I researched it... not on fb, but med sites... educated myself and then proceeded to live with it as it will never go away. I was a special education teacher and retired early because the fibro fog was interferring with my ability to remember the what and hows of an IEP and I had written thousands of them!

I also learned that staying busy and working in my yard also help with decrease in pain and increase in sleep. It also helps that my night time meds help me sleep also. It would be nice if fibro was all I had to deal with, but I have other health issues that causes flare ups of fibro.

It all boils down to this: Are you going to let fibro rule your life or are you going to rule it. Find a doctor that does educate himself/herself in fibro and isn't convinced it is all in your head.

grandma

 

[Pamelav]

I don't have fibromyagia, but was diagnosed with Chronic fatigue syndrome. Definite improvemnets over the years. How do I cope? Ha ha.. I still think I am doing something wrong to cause it. Not spiritual enough, letting negative emotions get in the way, believing I havent been completley obedient in giving up coffee, so therefore it plays a role, and still have the symptoms, on and on. Don't speak the Word enough. Actually, I am going to speak the Word much much more, and be healed. Too many testimonies about this. Whether it takes a day or years, many testimonies.

 

[butterflycharm]

Yes, [FONT='Arial','sans-serif']I have Fibromyalgia and Ankylosing Spondylitis. Can be very difficult at times.[/FONT]

 

[grandma dolittle]

Butterfly,
I understand your pain.... I have degenerative disk disease and spinal stenosis.... they work with fibro to make my life miserable at times.

What I have found that what helps most is exercise in doing active things; looking for postive things in my life. Stress will cause the muscles to tighten and fibro to flare up big time. I also pray. I learned to ignore the constant ringing in my ears from degerative nerve endings and to live with it. I apply the same to fibro and the rest of my health issues. It won't go away or get better and there is no cure.... so I will not let it make an invalid of me. I take my meds and Lyrica is helping me along with the spinal injections. I have pain meds and I only take one if I hurt so bad a hot soak in the tub and other meds don't take care of the pain.
most days I am contented and at peace from God. I still hurt, but I can ignore it in the beauty of this world God has given me to enjoy.