[lizardlady]

I'm tired of trying to live this way. Actually this isn't living, it's existing. I hurt 24/7. I'm so tired I fell asleep sitting on the toilet this morning. I sleep 15 hours a night on weekends and wake up still tired. I come home from work, sprawl on the sofa for a little bit. Then fall asleep by 9. I have to set the alarm an hour earlier than I actually have to get up because it takes me an hour to lever myself out of bed in the morning. I fall asleep at red lights on the road.

I'm so sick of this. I don't want to have fibro anymore. I don't want to have CFS anymore. I want a do over.

[Leed]

Bless your heart, I know exactly what you're going thru. I'm a chronic pain patient, and have been in debilitating pain for 26 years now, and there are times I just want to SCREAM!! But what good would it do besides have the neighbors call the police? I'm so tired of hurting ~ I'm sure that your doctors undermedicate you just like mine does. He gives me medication but it just takes the edge off -- I haven't been "comfortable" since before all this madness started.

For me, this is never going to get better so I may as well get used to it. You'd think I'd be used to it by now, after all these years --- but you just can't get used to pain, can you?!! Like you, I fall asleep in the darnedest places. I've even fallen asleep in the dentists' chair!!! Now that's tired!!! LOL

Dearheart, I'll keep you in my prayers -- they have GOT to come up with some sort of treatment for people like us. Afterall, they can send men to the moon!! Why can't they make us comfortable? Take care. Hugs, Lee

[lizardlady]

Thanks Lee. I guess you could say I'm undermedicated since I don't take any pain meds. I've tried all the over the counter stuff and mild pain killers. None of them work. Tried Lyrica and spent an entire weekend stoned out of my head from one dose! Never took a second dose. Can't take Savella (sp?) because I'm already on anti-depressants that effect serotonin level. Per my primary care doc the only thing left is narcotics. Can't function if I take them. I loved it when she gave me the script. She told me not to go to work if I took it. Well what's the bloody point of taking it if I cant't work?!?! I'm thinking of going back to my rhuemotologist to see if he knows of any other meds I can try.

Thanks for listening. I'm having a pity party for myself the last few days.

[lastyearisblank]

Oh ((lizardlady)) it's hard. Have as big a pity party as you want. Hope we get invitations?

[eskielover]

I guess I am very blessed because I am on a very high dose of narcotics for my 24/7 migraine headache that even neck fusion didn't help. I can function again just like before the pain hit. I ride horses, I have driven across country. I do all my yard work & house work, & if I were able to really work, there would be nothing about the narcotics that would stop me.

I know how exhausting pain is......the migraine pain I lived with for years before they were willing to prescribe the dose of meds that actually take the pain away.

One other thought I have been wondering. I know that diet can have a huge effect of fibro & also on CFS. Sometimes the gluten in wheat flour can make fibro even worse. Have you tried changing your diet? Guess when I get to the end point & nothing else works, I would always try the one last possibility & it that doesn't work.....then?????

It would always make me soooooo mad when I went to a migraine specialist through UCLA & they told me....."just exercise". I couldn't even get out of bed without throwing up from the pain......I don't hold much faith in specialists most of the time. My pain specialist is wonderful however with the pain medication. Really wish I could just change diet & have it work through. Gluten free diets are supposed to get rid of the inflammation that causes the pain with fibro. It may not clear it up completely, but supposedly eases the pain somewhat. Just thought I might mention it but you may have already tried that help.

I can really understand how your pain is effecting you through. There is nothing worse that chronic pain to really wear us down to nothing.

gentle

[lizardlady]

Thanks for the info about gluten. I don't think I could handle going gluten free though. Breads and starches are my comfort foods.

[sabby]

They have a lot of new products that are now gluten free and they really aren't that bad. It's a matter of getting used to them I guess. Like when I went from sugared sodas to diet soda....it was nasty to me for the first week or so, but I got used to diet soda and now I don't like the sugared soda....go figure LOL.

LL, I'm not in as much pain as you are but there are days when I don't even want to brush my hair because it hurts. I do have a bit of understanding of where you are at. I sometimes take celebrex to help relieve some of the swelling and it seems to help pretty good. I don't take it often, just when I really need it. I also take Cymbalta which is an AD with a touch of something to help with the pain as well. On really bad nights, I will take a flexeril to help me sleep. The only issue I have with that, since I don't take it every night is that I sometimes wake up feeling a bit hung over in the morning, but it's not gawd awful bad....just takes me awhile to get moving.

I'm sorry you are suffering with this and I hope you can find something to help take more than just the edge off.

[eskielover]

Originally Posted by lizardlady

Thanks for the info about gluten. I don't think I could handle going gluten free though. Breads and starches are my comfort foods.

Only problem is that if those comfort foods are adding to your pain, then they aren't really such comfort foods if they are making you hurt?

Don't know, but if I had tried everything else without any success, I would at least give it a try. The Kroeger store where I shop has gluten free flour along with the xantum gum (which gets added to the gluten free flour) that says it can be substituted in any recipe for the normal flour we always use. Don't know that it would be the answer to some of the pain, but know for a friend of mine who has tried it, it seems to be working wonders on her pain level.

Wishing you the best in this.

[Leed]

Hi again ~ have you tried Methadone?? It comes in just 10mg pills, and it really IS a good pain reliever. I really doubt that it would "stone you out of your mind." I'm on that along with the Fentanyl Patch and it does seem to help a little -- it takes the edge off anyway.

I just can't imagine your going without anything at all. I know if I did that, I'd want to blow my head off. My doc said now that my central nervous system is all out of whack because of being in pain for so long -- so it's very hard to treat. Don't wait til you get like me.

Just thought i'd mention the Methadone. God bless & take care. Hugs, Lee

[lizardlady]

Thanks everyone. I'll think about the gluten. I really don't think I could give up bread etc.

I hadn't thought of pain patches. I'm going to talk to my doctor about them.

[(JD)]

I'm checking out my reaction to gluten as well... and the very fact that I crave breads probably means I'm allergic (according to the allergist, you abhor or crave what you're allergic to.)

There are countless recipes and places to buy gluten free bread!

I've been where you are...was there a very long time and now only succumb to those thoughts and feelings from time to time. I can't work though, and that might be something you consider or plan for, for the future.

However, there is evidence that some cases of CFS clear, as it did for my brother. It lasted a few years and then eased dramatically.

I wish you better days.

[Travelinglady]

(((Lizardlady)))) I'm so sorry you're going through such a hard time. Surely there are some meds, anyway, that maybe could help you get a good night's sleep? I take tramadol, trazadone, tegretol (for bipolar and facial pain), Wellbutrin, and acetiminophen (sp?) religiously, plus I even sleep with special pillows. I've also been on ambien. I've had physical therapy, too, for the pain. I just bought my own cold laser machine and I'm going to see if that can help.

[lizardlady]

Well, I went on line and checked out the information about gluten and fibro. Couldn't find any scientific evidence of a link between the two. WebMD stated that gluten effects a lot of disorders that cvo-exist with fibro when people feel better going gluten free it's probably because it's helping the other problem. I also spoke to my pdoc who is up to date in what he knows. He said there's no research to show that going gluten free helps with fibro. We talked about it a bit. He agreed with me, I had to give up most of the stuff I love to eat because of various helath problems. Breads and such bring me comfort. It would probably no be good for my mental health to have to give them up.

Along those lines... the weather here has turned nice... warm with no fronts moving through and I feel better. Pain level is down to just "background noise" and the fog has lifted.

[embracinglife]

all i can say is I'm sorry you're going through all this. That would be very frustrating to be so tired all the time.

[imafloridagirl]

I just wanted to give a warning on the pain patches. They can be very dangerous. I was on them for some time. I was taking them as prescribed. I went totally unconscious a few times and almost stopped breathing. If my husband hadn't ripped the patch off I doubt I would still be here. I've tried alot of different meds. The best meds I've been on was MS Contin. Good luck to you, it's just awful to be in pain all the time.