Fibromyalgia

[highwaywomen]

Hey guys,

Hope I'm not getting too personal, but I'm becoming desperate. I have Fibromyalgia and I have been having a flare up the last few weeks. I've had FMS for 8 years (I'm 28) and this is one of my worst flare ups. Everything I normally do (Chiropractor, Reflexology, stretching, diet, heat) is not working. I find that sleep plays a major rule in how I feel the next day. I have been having a lot of trouble with it lately. I only take Flexeril at night and nothing during the day. I seem to be very sensitive to meds and have taken everything under the sun and nothing works, or the side effects are really bad. I refuse to take narcotics, I am usually able to deal with the pain. Sleep and distraction are sometimes key, but both have been failing me lately. Anyways, I am a full time student right now. I am not working, thanks to a family member that is letting me live with them. Anyways, I have been really stressed at school and I think that is keeping me up at night. So the doctor gave me a sleeping pill, Lunesta, and it does work. I hate hate hate taking meds and I've tried stopping it twice now (it doesn't have to build up in your system) and I am usually up all night. Yesterday was a bad day. I didn't take it Friday night, and as usual, I didn't sleep, and had to function yesterday because I promised a little girl I would be at her birthday party. My pain is all concentrated in my neck, shoulders, and chest, although from there it spreads but that is the worst spot. It felt like I had 100lb weights on each shoulder yesterday. I also have muscle spasms all the time, which are worse at night because I'm relaxing. The last 4 days my right eye lid has been twitching every minute or two and it's driving me NUTS!! I have been to my regular doctor and she pretty much told me she didn't want to see me (this was last week when I was confined to bed (for the first time since I've had FM!) because of severe pain) and told me to call my rheumotologist. I got in to her the next day and she told me to continue with the Lunesta and to call back if there were no improvements. She said "Jackie, you're doing everything right!" I thought - "No, I'm not...because why am I in so much pain?". It's a nice feeling when the doctors don't even know what to do for you! Anyways, I feel like I'm rambling to a bunch of strangers, but if there is even one person out there that knows what I'm talking about and has any hints that would be great! I do feel better today because I took Lunesta last night. I plan on laying around today, doing homework, and hopefully relaxing.

Jackie

By the way...I think because of FMS this is why I'm so connected to Stevie. I wrote her a letter (and gave it to her during 'The Edge' walk) and told her that she is my Rhiannon. She sings away pain and brings hope.

[mylittledemon]

Hey guys,

Hope I'm not getting too personal, but I'm becoming desperate. I have Fibromyalgia and I have been having a flare up the last few weeks. I've had FMS for 8 years (I'm 28) and this is one of my worst flare ups. Everything I normally do (Chiropractor, Reflexology, stretching, diet, heat) is not working. I find that sleep plays a major rule in how I feel the next day. I have been having a lot of trouble with it lately. I only take Flexeril at night and nothing during the day. I seem to be very sensitive to meds and have taken everything under the sun and nothing works, or the side effects are really bad. I refuse to take narcotics, I am usually able to deal with the pain. Sleep and distraction are sometimes key, but both have been failing me lately. Anyways, I am a full time student right now. I am not working, thanks to a family member that is letting me live with them. Anyways, I have been really stressed at school and I think that is keeping me up at night. So the doctor gave me a sleeping pill, Lunesta, and it does work. I hate hate hate taking meds and I've tried stopping it twice now (it doesn't have to build up in your system) and I am usually up all night. Yesterday was a bad day. I didn't take it Friday night, and as usual, I didn't sleep, and had to function yesterday because I promised a little girl I would be at her birthday party. My pain is all concentrated in my neck, shoulders, and chest, although from there it spreads but that is the worst spot. It felt like I had 100lb weights on each shoulder yesterday. I also have muscle spasms all the time, which are worse at night because I'm relaxing. The last 4 days my right eye lid has been twitching every minute or two and it's driving me NUTS!! I have been to my regular doctor and she pretty much told me she didn't want to see me (this was last week when I was confined to bed (for the first time since I've had FM!) because of severe pain) and told me to call my rheumotologist. I got in to her the next day and she told me to continue with the Lunesta and to call back if there were no improvements. She said "Jackie, you're doing everything right!" I thought - "No, I'm not...because why am I in so much pain?". It's a nice feeling when the doctors don't even know what to do for you! Anyways, I feel like I'm rambling to a bunch of strangers, but if there is even one person out there that knows what I'm talking about and has any hints that would be great! I do feel better today because I took Lunesta last night. I plan on laying around today, doing homework, and hopefully relaxing.

Jackie

By the way...I think because of FMS this is why I'm so connected to Stevie. I wrote her a letter (and gave it to her during 'The Edge' walk) and told her that she is my Rhiannon. She sings away pain and brings hope.

My good friend Deano has the same problem. Its funny cause I was talking to him about it last week. He said he had to change his diet quite a bit...and he works out, so that he's exhausted, and can sleep better. But, he also takes sleeping pills 3-4x per week. Then as we finished our lunch...he said "sex and masturbation help too." I then proceeded to spit out my coke and pizza.

[SuzeQuze]

Take the meds for sleeping. You don't have to be a martyr, just take them. Also consider cutting back your school schedule. Reducing your stress will help.

[jannieC]

One of my closest friends has Fibromyalgia, too. We're getting ready to start a water aerobics class at school together- I'll let you know how that works out for her.

[highwaywomen]

Take the meds for sleeping. You don't have to be a martyr, just take them. Also consider cutting back your school schedule. Reducing your stress will help.

Yes! I have definitely decided to reduce my schedule. I am taking 15 credits right now and I plan on going back to 12 next semester. I was doing so well over the summer, I thought I could handle the extra credit hours. My body is most certainly trying to tell me something. I plan on calling the doctor to see if I can get more samples of Lunesta. I guess I will suck it up for now and take it until I learn to reduce stress intake.

It's nice to know that people know what FMS is. I do not know anyone around me that has it, or for that matter has even heard of it until I explain. It gets kind of lonely sometimes, but then I listen to Stevie :)

Thanks for the reply!

Jackie

[estranged4life]

Sending you my positive thoughts...

I can relate to medical problems, my current health situation has worsen a tad bit.

[The Catdancer]

Keeping you in my thoughts.

[The Catdancer]

Sending you my positive thoughts...

I can relate to medical problems, my current health situation has worsen a tad bit.

What happened?

[sasja]

IVIg, if you have the insurance that'll approve it.

My deep symphathies Jackie ~hug~

[estranged4life]

What happened?

right temporal lobe is expanding, thus causing me more pain than before (I have had a migraine type headache for 3 hours now, not even hydrocodone is helping to ease the pain). It is now affecting my vision, sometimes I have blurred double vision and very bad mood swings (The tumor is located in an area that can affect my mental health - which explains why my temper has started to come back) along with other annoying side-affects (Numbness)

Been referred to have another MRI performed to see how much more damage my brain has suffered

[sasja]

Oh Brian. I am so sorry you are suffering that. Sending good thoughts for your MRI.
So sorry.

[SuzeQuze]

Yes! I have definitely decided to reduce my schedule. I am taking 15 credits right now and I plan on going back to 12 next semester. I was doing so well over the summer, I thought I could handle the extra credit hours. My body is most certainly trying to tell me something. I plan on calling the doctor to see if I can get more samples of Lunesta. I guess I will suck it up for now and take it until I learn to reduce stress intake.

It's nice to know that people know what FMS is. I do not know anyone around me that has it, or for that matter has even heard of it until I explain. It gets kind of lonely sometimes, but then I listen to Stevie :)

Thanks for the reply!

Jackie

That's great. I have to manage my stress levels because of back problems and TMJ but I can only imagine dealing with something more serious. Take care of yourself!

[JazmenFlowers]

so sorry to hear this. I don't really know much about this (I must do some research), but I'll keep you in my thoughts.

[HejiraNYC]

Have you tried one of the two treatments currently approved by the FDA for fibromyalgia- Lyrica (neuropathic pain med) and Cymbalta (antidepressant)? Since fibromyalgia is a diagnosis of exclusion, i.e., nobody knows what the hell is wrong with you, I would imagine you must have tried just about everything imagineable...

Wishing you and Brian the best! :wavey:

[sasja]

I am taking a high dose of cymbalta for my neuropathy right now and it is helping, that in combination with Neurontin and the IVIg..... Discuss the IVIg for sure as it's very indicated in Auto-immune treatment!

[skcin]

right temporal lobe is expanding, thus causing me more pain than before (I have had a migraine type headache for 3 hours now, not even hydrocodone is helping to ease the pain). It is now affecting my vision, sometimes I have blurred double vision and very bad mood swings (The tumor is located in an area that can affect my mental health - which explains why my temper has started to come back) along with other annoying side-affects (Numbness)

Been referred to have another MRI performed to see how much more damage my brain has suffered

Hope you're feeling better soon - cheers!

[highwaywomen]

Have you tried one of the two treatments currently approved by the FDA for fibromyalgia- Lyrica (neuropathic pain med) and Cymbalta (antidepressant)? Since fibromyalgia is a diagnosis of exclusion, i.e., nobody knows what the hell is wrong with you, I would imagine you must have tried just about everything imagineable...

Wishing you and Brian the best! :wavey:

Brian hope everything is ok. I'll be thinking about you.

I have tried Lyrica. I was the first FMS patient that my doctor tried it on. I suffer from insomnia and have a lot of trouble sleeping. Lyrica made me sleep 12 hours every night and it would carry on with me throughout the day. I was actually sleeping on my lunch breaks at work, in a chair. I have a hard enough time falling asleep in my own bed, let alone anywhere else. My muscle spasms increased ten fold. I went a few weeks before seeing my chiropractor and he noticed immediately that I was shaking all over. He told me to stop it that day. I looked on their website later and found that is one of the side effects that you have to 'stop right away and call your doctor.' I think I lasted about 4-6 weeks on it. My doctor later told me she put another FMS patient on it and the same thing happened to them. Funny how the FDA is finally approving a drug for FMS, but it causes those side effects. Granted I only know of two people with FMS that have tried it (myself included), but still. Cymbalta sounds so familiar, I am sure I tried it before. I have been on SO many different meds the last 8 years, it's bad that I can't remember them. I do know that when I was on Paxil it was so bad I ended up in ER. I know what Stevie is talking about when she mentions the Klonopin in interviews. I know it helps some people, you just have to be so careful. I am very sensitive to medications. Paxil really did me in and I will NEVER go near it again. But that's just me, I am sure it has helped others.

Thank you to everyone for all the well wishes. I have been cursed with a sinus infection this week and I just got back from classes. It's been a very long day and I think I'm going go lay down and watch some of the horror films I've been TiVo-ing the last few days (I love this time of year!). I think my immune system was down during my flare up, because I very rarely get sick anymore. The FMS is enough! Hope everyone is doing well! Thanks again.

Jackie