Nothing Helps! In Despair!

[SleepySteph]

I'm at wit's end.

I've had fibro for about 20 years. I've tried many treatments to no avail. Here is just a recent sampling:

Xyrem. I got a strange adverse reaction with much more severe, actually excruciating pain and stiffness. I tried working with different doses, but it was no use. I had it all the time, more at higher doses, but all the time.

Lyrica. I had worse headaches, and if I remember correctly, more overall pain.

Requip. I read promising information about Parkinson's drugs, like Mirapex and Requip, for fibro. Also caused excruciating pain and stiffness.

Elavil, which I've used in the past, does help me sleep, but it does nothing for the pain. (At one time, it did.)

I take Lexapro for mood, Neurontin (3000 per day) for mood and headaches, plus a host of other drugs for my Lyme Disease and other tick diseases.

I'm losing hope. I wonder about Wellbutrin, Effexor, Cymbalta. I'm afraid of getting enslaved to another antidepressant, though. (I have tried SO MANY TIMES to come off of Lexapro, but I couldn't. I had wicked discontinuation.)

I'm poor, and we live off of credit cards. Sad, but impossible otherwise right now. I already take so many drugs and supplements. Anyway, I mention this because I can't afford pricey alternative treatments.

Any help you can provide would be appreciated. I live with severe pain constantly.

Oh, NSAID and narcotics are out, too.

Steph

[daisys]

Steph,
I've had this illness since 1978, but the sleep disorder and pain started 20 years ago. Before that it was just crushing fatigue.

Before I started on xyrem (which is working for me, whew!) my doctor was trying a combination of ambien, klonipin, flexeril, and trazodone. His reasoning was that each was a lower dose to minimize side effects, but in combination would have a powerful effect on sleep. I still was having some alpha wave intrusion, so we went on to xyrem.

If I couldn't use xyrem, I would still be on that regimen possibly. It was better sleep than nothing, for sure.

I couldn't tell if you tried mirapex. I was taking that for RLS, and heard that in stronger doses it was helping some with fibro pain. It was right at the time I started on xyrem, so I went off the mirapex instead of going to a higher dose.

This illness is a challenge, isn't it? Hope you get other suggestions to try. Just don't give up, there seems to be more progress lately in the medical field. Hopefully, there'll be a breakthru soon.

[SleepySteph]

I appreciate your response, Daisys!

I'm sorry you've been suffering for such a long time. I know how challenging it is to stay positive and persistent.

I'm glad the Xyrem is helping you! And the other regimen before that. Here's how wacky I am with meds:

I couldn't take any of the ones you mentioned! I've tried every one, and had major problems with all four! I metabolize slowly, and for some reason, I tend to have paradoxical (the opposite) reactions, no response, or nasty adverse reactions. This is true for many types of meds, but especially ones that impact the brain directly.

I'd like to try the Mirapex. I think it's .25 for a week, .50 for a week, and onward to 4.5, only at night, right?

I worry about that being just like the Requip. I'm willing to try, though. I know it can cause compulsive eating, and I already have that. I need something for this pain, though. It is severe, everywhere, and constant.

I want to go back to school for nursing. I also need a part-time job for income. I can't do either, though, with this degree of pain and stiffness.

Yeah, there is hope on the horizon. I can't wait until Merck brings out Gaboxadol. It's supposed to work on GABA unlike the benzos do, and with no addictive potential!

[daisys]

Steph,
Wow, you do have a challenge in finding meds you can work with.

I had heard mirapex at .75 and up helps with appetite control. I had been taking .50mg. Actually, the RLS was getting worse and I'd been just gutting it out, so I went up to the .75mg and voila! It worked! I was struggling with always being hungry, and I finally got relief with mirapex. I hear the original drug, Bromocriptine has been used since the 30's and it has a good safety record.

One problem with that class of drugs is they can cause sleeplessness. Bummer, I think the pain is tied in with the insomnia. It seems to be for me, anyway.

Another thing I just found this morning was a site called recoverfromcfs. It's a scientist's account of how he recovered from CFS and has some interesting points. He didn't have pain, or insomnia, just straight CFS. But you might want to check it out anyway.

Have you tried acupuncture and massage (from someone who knows fm)? Both help me with the pain.

Hope you find something soon. I wish you the best.

[SleepySteph]

Daisys: I wish I could try acupuncture and massage. I can't afford the expense. I am in serious financial duress.

Thanks for mentioning the CFS site!

I have three tick-borne diseases, and I'm going through treatment for them. I developed the fibro as a result of one or more of them. One is Lyme, another is a different bacterial disease, and the other is a disease like malaria. I and my hubby have gone through bankruptcies years ago, and we're in severe debt again. Can't be helped. He has a modest income, and I receive a modest amount of SS Disability.

Appetite control with Mirapex? That would be sweet. I'm not surprised about the insomnia. At .25 of Requip, I had severe insomnia and agitation. And that was with Neurontin and Elavil! Hmm. I wonder if it could be taken earlier in the day.

I might ask about Wellbutrin, also. I already take two antidepressants, an SSRI and the Elavil, a tricyclic. The SSRI wouldn't be problematic since that only addresses serotonin. The Elavil might, though, since it also addresses norepinephrine. Wellbutrin addresses dopamine and norepinephrine.

I know that a central dopamine issue can create fibro. I'll push to try Mirapex, and if that doesn't work out for me, I'll ask about Wellbutrin. The PA I see mentioned it, anyway. (I see the physician assistant at my Lyme doctor's office. I rarely see the doc.)

You mentioned bromocriptine. I know that's Parlodel. I'm not sure it's better. I think it may be ergot derived, for one. That can create more side effects, I think. I may want to look into it, though.

I have to get something for this pain!

I hope you have a restful holiday weekend. It will be soggy here with the remnants of Hurricane Ernesto, but I look forward to staying in a lot.

[daisys]

Steph, I'm hurrying out the door, but just saw this: CFIDS Emergency Relief Services, Inc. The site can be found at cfidsers with dot org. It says 'Helps CFIDS patients dealing with financial crisis.' Hopefully, something you can use.

Hope Ernesto isn't too mean to you. Maybe a good time to do some aggressive resting? Hope so.

[SleepySteph]

Thanks! I'll check out that site.

We're getting pounded with rain and wind. We had one power outage already. I hope we don't get another.

It's after 3:00, and I haven't even had breakfast yet! Yikes. I have to get a move on!

All the best to you.

[SleepySteph]

I checked out the site. They can't help anyone else, apparently. You can do your own fundraising(!), submit it to them, and they'll send it to you(??). That's not gonna happen.

Anyway, here's something from their site: (It took me a minute, but I realized they're saying Person w/CFS, Person w/Fibromyalgia, Person w/Multiple Chemical Sensitivities, and Person w/Gulf War Syndrome. I have the first three!)



Dear PWC, PWFM, PWMCS, PWGWS,

I am full of compassion for you and your situation. If this foundation were as rich as it could be if more healthies were to contribute on a regular basis, we could ask you to submit your applications for help.

But we can't. There is not enough money in the C-FIDSers treasury for that.

As a rule, we identify the people who are going to receive help from C-FIDSers, not the other way around. And we prioritize needs. But we get letters pleading for our help even though our inability to take applications is well publicized.

Moreover, we do not have the money to run investigations on the people who write us needing our help. If we don't already know you, we have to be certain that the person we would like to help truly qualifies, that is, fits the description in our mission statement.

Oh, well.

I deeply appreciate your telling me about this.

[daisys]

This outfit doesn't want anyone asking for help, only wants the money sent to them?! Yikes! I bet they have only one indentified receiver of funds.

I sure hope mirapex and wellbutrin work out for you. You've probably already looked at the diet angle. I got much relief by finding out gluten gives me joint pain and muscle soreness (among other symptoms) so I avoid grains. Anyway, hope you find something that works.

[SleepySteph]

Thanks!

When I see the PA in October, we'll hash this all out. I spoke to her on the phone recently, and she didn't want to switch anything now. I understand; I had just started a different antibiotic, plus I seemed to have residual efffects from the Requip (tendonitis).

I'm not very hopeful about Mirapex since it's the same type of medicine. The increased muscle pain, as well as the joint pain, tendonitis, and severe stiffness were adverse reactions the company has documented. This class of drugs just may not be for me.

If Mirapex causes issues, I might see about Cymbalta. I would be able to stop the other two antidepressants and just take this. It addresses serotonin, norepinephrine, and dopamine (it's a weak inhibitor for that). And if THAT didn't work, I'd see about the Wellbutrin. I'd have to go back to Lexapro, too, with that since Wellbutrin doesn't address serotonin.

Despair abounds. I don't do well with brain meds. I don't do well with antibiotics, either, and I need them for the Lyme, etc.

I had to drop my Elavil because of tachycardia. And at this tiny level, I don't think it's doing anything helpful.

One day at a time.

Steph

[oceanblueskygirl]

Steph,

Have you found anything that helps? I am still looking. I'm doing a sleep lab tomorrow (hate those) and going to see a sleep specialist on Dec.21. I hate this. Ugh!

~oceanblue

[Sleep Research]

Why not try a research study? Go to www.mlnstudy.com.

[oceanblueskygirl]

I am unclear about why someone might take fibromyalgia drugs when the fibro is caused by Lyme? Would the medications help if the pain is caused by lyme?

[Conway]

I'm so sorry you're in such pain right now. It's a shame we can't find something that would work for everyone.

Is your pain related to changes in the weather? It is in so many cases, yet from time to time you'll meet another fms patient who is not affected by the weather at all.

I've taken most (if not all ) of the medications above and have had various (some good, some bad) experiences with each. Xyrem, Oxycotin,Oxycodone, Requip, Premarin, Flexeril, Xanax, Bentyl, Phenergan are the ones I take now.

Several years ago I had a strange experience. At the time I was taking Sonata (along with several more meds) and Demerol. Demerol, as you know, must be increased almost once a week because the body demands more and more as time goes by.

My doctor suggested I try Methadone. I agreed, and started it the next morning. (He said that I didn't need to wean off and on because the drugs are different.)

After a day or so I noticed that I was feeling a little better, but my disposition changed for the worst. Had my husband not been with me in the grocery store one day, I might have said something that I shouldn't say. As the days went by, my mood went straight down.

To make a long story short and to tell you how weird this sickness is, we found out that the Sonata and the Methadone caused the problem. So I dropped the Sonata, and took the Methadone. The demerol had no effect, either way.

A year or two later, I found that I can't take Mirapex and Methadone together.. If I do, I can't eat and I am terribly nauseated.

If you have time, make a chart about how you feel every day, what you eat and when you eat it, which meds work and which don't. What happens if you take them at different times each day?

I know that takes a lot of time, but if we can find a pattern, maybe we can get some relief. Hope you feel better soon.

Conway

[SleepySteph]

I didn't get any notification of new replies in my email. Strange.

Nothing, but nothing, helps. I just started nortriptyline, but I don't do well with norepinephrine drugs. I think I have to make an appointment with a pain doctor.

Thanks for your concern!

Oh, Ocean: The meds would help regardless of cause. I'll still be treating my Lyme, but I have to get something for this horrific pain.

FMS has many causes. The end result is problems with central sensitization. To put it simply, our central nervous systems are on overdrive.