OT? September is Pain Awareness Month

Ginger, I do this too. In my case I know it isn't going to make me worse in the long run, and in fact, keeps me mobile and fitter than I would be if I didn't just keep going. Sometimes it gets a bit grim, and one just grits one's teeth and goes on, but usually a nice distraction can sideline the pain for an hour or two.

I find swimming and stretching exercised help a lot, and walking helps my knees: I have something long, complex and Latin wrong with them that basically means I have wobbly kneecaps, and occasionally they feel like they are dropping off. More often they feel like they have been nailed on! Walking keeps the quadraceps strong, and helps keep the kneecaps in place, which helps them hurt less, so even when it's a killer, I keep walking.

((((((Hugs))))))

When I read these discussions I always end up at a loss for how to fee. I am on disability. Part of that is because the first symptom of my physical crumbling was mental confusion. I really believed I was developing early on-set Alzheimers. I lost all my contracts (I was a professional writer/PR/web content producer) and was unable to figure out how to look for more work. At the same time fatigue was turning me into a turnip.

But the pain .... oh my, the pain. I tend to think mine is not that bad. I push on as best I can and my doctors assure me that exercise is necessary. I agree. But after 4 months of near daily walking for 30-45 minutes on my treadmill, I just crumbled again. I never really gained any ability to do more or go farther or faster. The wall stayed pretty much in place. But one night after walking (I really thought that I couldn't, but pushed on), I couldn't step down off the thing by myself. It was several days before I could get on again, and now I am really lucky if I can walk 15-20 minutes, and when I do I pay for it big time. My pain does stop me. And if it doesn't, I get sick. Really sick -- fever over 100 F for days, pain at high levels all over -- not just in my normal pain spots, migraines and if I'm really lucky, vomiting. I want to be brave and I want to keep going. But if I do, the payback is hell.

My DH and I drove over to Seattle Monday morning early. I don't take travel well. By the time we arrived at our agreed upon destination, I had a fever. By bedtime I was coughing and had a righteous sore throat. Poor Russ drove me home yesterday with me nursing a miserable head ache and dodging nausea all the way home. Today I'm "resting." Damn. It's this inability to actually DO anything that drives me to the brink. And yes, it will get worse. I can't stand to think about it, and I have my exit strategy in place.

I agree that support groups are important, but I ended up having to leave the only pain support group I found here. I know this sounds totally stupid, but I was overwhelmed by the crushing wall of pain in that room every month. OMG -- I would walk in and it was like I was feeling everybody's pain. One young woman, I have no idea how she goes on living, would walk in and I would have to leave. If I didn't I would get a nausea effect from her presence. The air fairly vibrated around her. She was so frail and nearly transparent.

I am better off by far than my friend who has Trigeminal Neuralgia caused by an auto accident injury. I am less well than another friend who has fibro but not lupus or Sjogren's Syndrome. Fibro will cripple you, but it won't make your organs shut down. At least as far as anybody knows right now, but I think that they know precious little about these autoimmune diseases.

Doc, you give me hope in a grim sort of way. I sleep now. Didn't for 5 years. Then on a whim my dr. gave me amtriptylene -- an old tri-cyclic antidepressant. I slept that night for the first time in years. It was precious and for the most part it has lasted. Sometimes I have to take two. Mostly I take one. I figure if you can keep going without sleep then I should be able to keep going for sure now that I have found a way to sleep. One warning: sometimes when I need two pills for an extended time it causes a nasty flare of my Interstitial Cystitis. Ugh. Look it up.

Cindy, I stopped writing my blog because I ran out anything to say. I needed to concentrate on not being chronic for a while. I think I will start blogging again soon with a new blog that somehow incorporates all of me.

I pray all you who hurt will find comfort, peace and ease, Sunny

Sunny, you have a lot more going on for you than I have. So far after

10 years, the fibro has got neither worse nor better: it just is. Goes in cycles a bit... Some days/months/weeks/hours are better than others, and breaking the lack of sleep cycle is an enormous help. I do add the severe IBS (caused by a grumbling appendix, and aggravated by 10 years of gall bladder disease), RSI in both shoulders and one wrist, a lazy eustacian tube that gives me virtigo, and the knee problems, but they are mere irritations compared with the load you carry. I'm not at all surprised that the support group added to your load rather than lifting it. I find that too with on-line groups. I did find the pain management group a LOT of help. We started by banning phrase 'I can't do that'. We worked towards being able to do things, where they were physically possible, and where it was the pain that was stopping us rather than the underlying problem.

My doc put me on amitriptylene: low doze, once a day before bed... OK, it broke the cycle and I started sleeping again, but even on the low doze I had, I got ALL the side effects! And it was like a chemical lobotomy! After a while SOME of the side effects faded... But so did the pain control and sleep effect! They upped the doze, and all the side effects came back in spades. I cannot function on it. I really am better off not sleeping than being a zombie with nausea, vitigo, palpitations, blood pressure that rockets about all over the shop (usually mine is on the low side - I see stars and keel over if I stand up too suddenly!), and all the rest.

You have to do what you can. I admire the way you carry on despite all the troubles that beset you. I feel lucky to be inspired by you.

I don't want to inspire anybody. I just want my life back. Today I'm feeling really and truly sorry for myself. No reason, just another hard whack of reality. My husband has started riding his bicycle to and from work. He's loving it. And it's been great for him. He's lost weight and is eating healthy and feeling better than in years. He rides around 12-20 miles most days and takes long rides on weekends. He's thinking about a 100 mile ride next weekend that's a fundraiser for spinal cord research. This has opened so many new doors for him and I'm really happy. But I can't go. Not even down the hill and back up.

So there, I'm being small and petty and today I'm feeling sorry for myself about something that I can't change and neither can anybody else.

Too bad all the miserable meds I take mean I can't drink, LOL.

Enjoy life every single day and do everything you can do, every day. Don't let a single door stay shut that you can open. Don't let any opportunity go by. Use up every bit of your life so that at the end, they'll have to say "She just didn't have anything left because she used it up every day."

Love, Sunny

That I fully understand. My wants and can'ts may be different from yours, but the feeling that my wings have been clipped remains.

I'd rather have the odd glass of wine or pint of beer than take the amitripteylene, that's for sure!

See, this is my thought for today. Thank you.

And to you.