Oxy, I know what you mean about the comfort the board gives.Just knowing that there is a group of people experiencing similar issues has helped me more than I would have expected.The kindness I have been shown is amazing too. A few people haven't been all that nice as I am the dreaded Newbie, but for the most part unbelievably helpful. I have found low cost pharm help on this site, but many of these have criteria that is too limiting for most, like job loss after Jan1 etc. Anyway, I am so glad you are here for mental pain relief and your good attitude and energy rings loud and clear. Thank you and I so appreciate your strength.

I only hope that you have now found a decent Pain management guy, good doctors for this illness are hard to find any where in the developed world. I am so luck with my GP who knew nothing of this illness when it flared up again after 6 years of remission she has learned a lot from me as I take her in papers that I find and suggest websites for doctors to help her she now has several patients with the same condition and is able to spot it quickly at an early stage so her patients get the right advice right at the beginning. She is also good enough to see me every 4 weeks as I have periods of being suicidal on occasions; this means she can keep a close eye on my mental health. Since my mother died in December neither of my brothers keep a close tab on me so if I did take my own life no one would notice for several weeks, and I would hate that to happen. So if I do decide to go down that route I will go and stay in an hotel room for one night leaving a note and all the information that would be needed for contacts, and leave on the coffee table all the stuff needed to wind up my estate. Sound morbid, but sometimes the quality of my life is so poor that I think that it is not worth going on. Anyhow my mother’s estate has not been wound up yet I am an executor to her will and have to stay here to see that through.

The fact that you do not know how you are going to be when you wake up in the morning, also that tasks take far longer to do due the symptoms of this illness, the fact you wake to pain, poor memory function, blurred vision. What time of day it is. These are ones that come off the to of my head. I am going through a bad patch at the moment due to overdoing it in the first three days of this week, I have been ill for 13 and half years and should know better.

Fortunately we are having a long weekend with no one going back to work until Tuesday, so long as I take it easy until then I should be in a better state for what is arranged for next week. I have finally got the social work department to let me have a home help, this has taken 5 months and for two weeks I will have two home helps coming in for an hour every day to get rid of the piles of paperwork, and other clutter and do some much needed cleaning and ironing.

I made a cardinal error with my PM and now find myself without any medical care.
I guess when I saw him, I missed the part about calling their office asap if anything changed. Well I had just filled my script and suddenly had a back molar break to the gum, followed by an infection in my bloodstream from ignoring the tooth too long, causing my legs and feet to swell up like balloons. But at first, I didn't even consider it could be from an infection. My first thought was, "What's new in my life?" And the only new things were the scripts he'd given me, so I stopped them. A couple days later I realized it was an infection and started on antibiotics. I also increased my pain meds by only 1/2 of a tablet each dose, but that added 2 additional pills a day total. And when I was finally able to contact them and asked for a refill, I was dropped as a patient because I asked early.
Now if your wondering why I didn't contact them that first day, or even in a couple days, it's gonna sound really stupid.
My husband who many of you may remember also suffers with CP from DDD, a fused neck and Avascular Necrosis which he had a total hip replacement for a year ago.
Anyway, he had just started a 3 week graveyard shift to cover someones vacation (he has to now cover any shift they ask, but he still has a job after their recent layoffs). And he was having such a hard time sleeping as it was, I didn't want anyone calling here because the phone would wake him and it cannot be turned off or unplugged because of how it's attached to the wall (don't ask ) and the lowest ring was still too loud. And you can't just call the PM, you have to leave a message and wait for a call back.
So I was doing what I always do, putting everyone's needs before my own. And now I'm paying for it.

So I've been searching ever since for another doctor, but because I saw this one, no one else is willing to see me.

You are so right about this. I've seen my regular doctor, a rheumatologist and a pain specialist and the only one who gave me narcotics was my regular doctor. I was diagnosed last year and trust me when I say it's been one of the longest, most painful years of my life. My doctor says I have the worst case she's ever seen. For me it's kind of easy to get bummed out and feel pretty worthless sometimes (despite the fact that it's not my fault) because I'm so exhausted and in pain most of the time. It also affects my appetite and eating, too. Either that, or it's all of the meds I have to take. I wouldn't wish this on anyone, that's for sure!

I've had fibro for over 25 yrs & I find it very progressive although docs say no. In the beginning I only had slight aching & went through an awful depression because back then they said it was all in my head as I steadily got worse. Now I have days I cannot walk at all. Anyone else experience more symptoms & worsening with time?

I've only had it for about a year and it seems to get worse all of the time. I shudder to think what the future holds for me, but I not to think about it.

Oxy, I just wanted to let you know that I have an implanted intrathecal pump and it has been a godsend. As Eluded posted, the meds do not go through all of your organs and very little is needed compared to your oral dose. One of the biggest upsides to it is that since it doesn't go through all of your organs and straight into the CSF, there is very little, if any, opiate drowsiness.

It has dramatically increased the quality of my life and functioning, and I would be more than happy to tell you more about my experiences with it if you'd like. I have discussed the pros and cons with many potential pump candidates at my PM clinic; it helps them make the decision whether or not to have it implanted, which is feedback that I wished I had access to when I had mine implanted 10 years ago.

Even if you are still in doubt, consider having the "trial" done with you doc to see if you are even a good candidate for it. They will insert an epidural inpatient and deliver morphine or fent to see if it is even effective for you. They usually consider a 50% or more reduction in pain successful, so if you don't get that much benefit they won't implant it anyway. It is probably worth trying to see if it's suitable for you as it could really improve your quality of life.

I don't even know how this stuff about cancer got into a fibromyalgia topic. However, my sincerest sympathies, Oxy, and you are in my prayers. You've been a good source of information since I started on this board and I've always liked you. Keep your chin up, friend.

Personally, for me, Fibromyalgia WAS progressive because I LET IT get progressive. It's a very manageable illness, if you do it correctly. Pain meds only mask your pain - they don't get rid of it. What lowers your pain is eating right, not smoking, no or very little caffeine (can't help it in green tea!), give up soda and start drinking water, stretch stretch stretch, use hot pads, hot rice or corn bags, ice, hot showers, get a massage, go to a chiropractor (if that's your thing), get some accupuncture, get some body work done, start going for walks, basically make sure your muscles are getting as much oxygen as you can pump into them. I feel 100% better than I did 10 years ago just by taking myself off a few meds and making some changes in my life. Realize that YOU are in control of Fibromyalgia - it does NOT control you!!!

Actually, recent genetic expression research show that there are 7 different subtypes of fibromyalgia, each one of which is a distict clinical syndrome. Some subtypes are much more severe than others and with differnt clusters of symptoms.

I only mention this because sometimes when people figure out what works for their fibromyalga, they sort of assume that what works for them should work for everybody else. However, we now know it can be much more complicated than that.

Still, I like the advice you give -- most of it is stuff that is likely to provide some improvement to others. But some people are going to have to do other things than what you did, maybe take a variety of meds on top of that, and still not do as well as you have, especially if they have a very severe subtype.

Mark I agree. I have always said each person is not the same and their thresh hold for pain is also not the same. I have a very low threshhold but will hold out on taking anything real strong until I need to. But I heal failry quickly. I find when I am very stressed I will flare up. I have been dealing with this for years. Back when I fist started trying to be diagnosed, they would give you paxil took two pills and my tounge swelled. I told the Reumy I would rather be in pain. I am not taking anything like that ever again. It is very hard even today to find a doctor who treats it seriously