Help, I have never felt like this

[Kimchi]

Some of you may have read my posts about my possible dx of fibromysalgia. I have the new sxs of fatigue and muscle pain. But I also have a sick feeling, Sort of like having the flu. I am beginning to feel like I am just dieing. Help you guys. Please let me know if you feel like this. Is this what it feels like to have fibro? I am also wondering if it could be my pain meds. I have been on oxycontin for about 7 mos now.

[ICNDonna]

It's not unusual to have a nauseated feeling from pain medications. I know I can't take them without anti-nausea tablets. I suggest you give your doctor a call.

Donna

[Kimchi]

This is waaaay more then nausea. But how come the nausea just started after all this time?

[SandyRN]

Fibro often presents with 'fibro flares', basically the same idea as an IC flare but it's all over the body. I wrote to you on your oxycontin post that you may have another reason to have the nausea....do you have GERD or excessive heartburn? I know when I flare from the fibro my entire body hurts,well, it hurts every day, but the flares are exceptionally bad. I also have myofascial pain syndrome and thats a muscular problem that goes along with the fibro. It's all very, very painful, and add in the IC and it can be totally debillitating.

If the nausea is a new symptom for you you should talk to your doctor...it's not common nor is it normal to take the oxycontin for 7 months then suddenly become nauseated from it.

Hugs, Sandy

[Moonheart]

Have recently reduced your pain meds or anything like that? I know I felt similar when going through withdrawals, which can happen even if you just reduce your dosage too rapidly.

Good luck!
Moonheart

[Kimchi]

No change in pain meds. Still the same. I have heard people say that after being on OC for a long time, then the dose needs to be increased. Could I be having withdrawals from this? I am going to try to get off this OC. I hate taking it.

Thanks for answering my questions guys! The info helps. I went home at noon yesterday and basically slept until 5 a.m. I do feel some better. Still achy though.

I have an appt to see a rheum on 1/31. Can anyone tell me what to expect?

[armslee]

Hey Kim! You working today? Sorry I didn't call back, I was in another "whoa is me slump"

[SandyRN]

The rheumatologist will probably want to draw some blood to check your sed rate and make sure that you don't have inflammation, and sometimes they will check rheumatoid studies and lupus studies to rule those diseases out because fibro can mimic a lot of other diseases. The he'll probe your muscles and I can't remember the exact amount but to get a dx of fibro you have to have something like 11 out of 19 pressure points that hurt when they are manipulated. Like I said, I dont remember the exact amount....but the appointments usually aren't that bad. I came away a little sore, but I also came away with a dx of fibro, myofascial pain, and chronic fatigue. It's good that you're seeing a rheumatologist because that's the kind of thing that they deal with every day.

Let us know how your appt goes!! Good luck!

[SandyRN]

ps...if you are wanting to stop taking the oxycontin you need to do it SLOW, and I mean REALLY slowly to avoid withdrawls. I never had withdrawls from needing a bigger dose, I was just in pain. There's a big, big difference. I miscounted my pills once when my doctor was out of town and had noone to cover for him, and I had to miss 2 doses over the weekend...it was NOT fun, then when I switched from the oxycontin over to the duragesic patch I had withdrawls then too....I thought I must have been crazy, but the patch wasn't strong enough to cover what the OC did. If you are wanting to change narcotics then work with your doctor to level out the amount of OC you are stopping with the amount of the new drug...if you are stopping it all together then do it REALLY slowly to avoid those terrible withdrawls.

[SandyRN]

ps...again! http://fibromyalgia.lifetips.com/cat/58364/diagnosing-fibromyalgia/index.html

http://www.fmaware.org/fminfo/brochure.htm

[Moonheart]

No change in pain meds. Still the same. I have heard people say that after being on OC for a long time, then the dose needs to be increased. Could I be having withdrawals from this? I am going to try to get off this OC. I hate taking it.

Thanks for answering my questions guys! The info helps. I went home at noon yesterday and basically slept until 5 a.m. I do feel some better. Still achy though.

I have an appt to see a rheum on 1/31. Can anyone tell me what to expect?
Yes, absolutely that is what could be happening! Everytime I became tolerant to it I had more pain, but I also went through withdrawals. I was ALWAYS having withdrawals with OC.
I got switched to MS Contin and not only did I not become tolerant (I stayed at the same dose for two years) but it gives better pain control. So I prefer it.

I did finally increase my dosage with my doctor's consent early last year and have had increases I think 2-3 times since then. But always due to more pain/symptoms, not withdrawals.

[waterflow]

I used to feel like I had the flu all the time with feeling sick as well. It started after the IC did. Doc gave me something for the sick feeling. Mine was so bad too I felt like I was dying or wished I was. Mine stopped mostly with taking the cystoprotek before that I was taking tylenol like it was M&M's. Wonder why doc never mentioned Fibro thing to me? Maybe Uro's don't know about it? Glad you are feeling a little bit better. :)

[Kimchi]

Dr Evans says firbo goes hand in hand w/ IC. I have had IC since 1995 and have NEVER felt like this but for the past several mos, I have been so sleep deprived. I get 5 hours MAX at night. About 3 nights out of the week, I probably only get 3. It's usually due to pain or stress or both. He said sleep deprivation was my worst enemy right now. My mom had a heart attack in November and she almost died from it. She is one luckly lady. Evans said that was a major stressor and could have triggered the underlying fibro episode. Either way, life has been hell for me lately. Working has been so hard. I am a paralegal and my job is sitting behind a desk but when you feel like poop, it's hard to concentrate. My boss, thank God, has been really good about me having to leave early at least 1 time a week. They changed me from salary to hourly to accommodate that so I think that says a lot about their acceptance of my problems.

Thanks for the info on the oc. I don't want to stop taking my long acting drugs. I just wondered how much of my problems were from taking OC. It just seems like since I started it, I have had all sorts of strange things from panic attacks to feeling like I do today. I am not saying that is my problem, I just wondered. I hear so much bad stuff about this medication. I used the duragesic patch too and I hated it. It was not the medication itself, it was the patch. It would not stick, I broke out from all the tape, the meds did not dispense correctly. I too had w/d from changing from that to OC though I did not know that is what it was. I was sick for 1 month and then all the sudden, I felt better.

I usually handle all this pretty well, but lately, I just wonder how I am going to continue on w/ this new dx. This is truly awful. Do you ever shake this sick feeling?

[SandyRN]

I see Dr.Evans too..he even came back in the room to check me to see if I have TMJ, and he dx'd me with that too! I have good days and bad days but I understand what you mean about the sick feeling. There are days I just feel awful, like I've got a bad case of the flu, minus the sore throat and cough. Then I have days that are great and my pain meds work, and I really feel pretty normal...those days have been few and far between lately, but winter seems to be harder on me than Spring and Summer with all the ups and downs in temperature.

The hardest part of fibro is actually getting diagnosed, and once you are there are ways to treat it. One thing being studied is Guafinesen (sp?), the expectorant that is in cough and cold meds. It's given at REALLY high doses and is still pretty new. I read today about another method of dx'ing it using hair samples, and some new protocols that are being used in trials. There is hope.

[Kimchi]

It costs me so much to see Evans. Hotel, gas, food. Each visit is like $500 and the trip nearly kills me. 16 hours round trip but I only see him every 6 mos.

[Eccles]

If you want to read about the Guaifenesin treatment, it's at www.fibromyalgiatreatment.com; I've been doing it for 16 months now.

[Kimchi]

I saw the rheum on Wednesday. She reviewed all my labs for the past 5 yrs and is concerned I have bone cancer. You nurses, have you ever heard of this w/ elevated platlettes? What else could this mean? She also thinks I may have RA. It's all been very hard to swallow. I am trying to remain positive. I am getting ready to start a battery of tests to rule out other stuff.