Hi everybody. I'm in the middle of a terrible flair up of my FM/CFS. Can hardly move. Waiting for Dr. to call in something stronger for pain. Hope to be back on in a couple of days. Thinking of ya! Linda D

Sorry you feel so bad. I hope your doctor gives you something that really helps. Has he ever given you oxyir 5mg. It is the same as percocet w/o the tylenol. It works in just a few mins. They are instant release. They work short term but, really helped us. I don't take them unless I'm in a lot of pain but, my husband takes about 3-4 of them per day for break through pain. He also takes oxycontin 40 mg. sustain 12 hrs. 3x's pd. It can be habit forming because it is a controlled substance. Take good care, Kim

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[This message has been edited by Elaine from Kentucky (edited 01-24-2001).]

It must be the season for the flares.
I went to the doctor after a whole month of November flare and he put me on anti-depressants....I am now a walking zombie...My legs stopped hurting but I can not feel my brain LOL..... I read the transcript from that show with the dr from NY who has the injection ... I have to admit the pig's liver part scared me off. Feel better :-)

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~Luv, Scoobs~

Hi everybody! I'm still alive and somewhat able to move now. I'm still walking like a zombie and hurt with every muscle that moves, but I'm trying. Thanks for all the kind wishes from Scooby, Kim, Cyn and Elaine. It sure helps to know that someone cares! Doc ordered some Vicodin which really works well for me. He will give it to me when I have a severe flair, but not on a regular basis. I think I may ask him about it when I see him again. I have got to get back on my feet soon. Christmas will not wait!
Elaine, I'm really worried about you. Somehow you have to get out from under that blanket of depression. Will your doc maybe give you some samples of Prozac to try? I've taken them for a very long time, and they not only help with my depression, but they increase seratonin (spelling?) in the brain. I first read about it being used in a FM newsletter a long time ago. I asked my doc to please lets try it, and it has worked better than anything I've ever used. Do you have AOL Instant Messager? If you do, we can talk there. If not, you can get it free. Let me know! Please hang in there and keep fighting! I care very much! Linda D

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[This message has been edited by Elaine from Kentucky (edited 01-24-2001).]

Hi Linda, you girls are going to have to learn about the fascia tissue, the pains you have discribed are the fms pains. They are the easiest to get under control, read my post (trying to help others). Try sitting on your bed with your feet on the floor, now do body twists, start slow and pick up the pace as you desire. The tingling you feel will be the fascia tissue releasing. The draw back is the fascia tissue will start contracting in about two hours and it will be very painful, to stop this pain you will need to do the twists again. Each time you do the twists or any stretching you are going to go through this problem. However every time you release the fascia tissue you will have longer periods of low pain and this will continue until you will only have to exercise one time a day. The muscle spasms are another problem though, they require another approach.

Linda, I'm so sorry to hear about the flare up. How can you even get out of bed? I'm new here and my 14-yr-old daughter was just diagnosed with this before Thanksgiving. She is also having a flare up after about 2.5 weeks of doing pretty well. Besides 10 mg of elavil and 20 mg of Prozac, the dr. has given her naprosyn, darvocet and percocet(sp?) for the worst pain, and prilosec for nausea. I am so worried about giving her the darvocet and percocet, though, for fear of dependence and I have read that it also interferes with deep sleep. But I hate seeing her in so much pain. I also got her started with some gentle yoga. Do I need to be so worried about the heavy-duty painkillers or just give them to her when she is flaring like this? And is it better for her to try to get herself out of bed and move around during a flare up, or is it ok to stay down? I am also giving her massages with an arnica montana gel that really seems to help (short-term anyway) and a massager when she can tolerate it. I need any and all suggestions and your experiences, please!

Hi Linda hope you are feeling a little better....the thing I have noticed about my worst flare ups is that they are always the month of November ...???....It must be something to do with the way the weather changes? Anyway I was thinking of you http://www.healthboards.com/ubb/smile.gif

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~Luv, Scoobs~

Hi everybody. I just got back from a fairly short trip to Doswell, VA. Went to see my grandson get the National High Points award for hydroplane racing. It was nice, but the riding wears me out. We left Sat. , spent Sat. night and just got back in. I am still a little achy from the flair up, but much better. If I could just stop being so exhausted all the time it would be nice!
To ValB626, to answer some of your questions, I would say let your daughter have what the doc prescribed as long as she is in a flair. Let her rest if she can. I would stay in bed if I had a choice, but flair or not, I have to keep going. I think I could get over it quicker if I could get some real rest time. Your daughter is very lucky to have you taking care of her. My 14 year old daughter also has some symptoms of FM, but not enough to be treated for yet. I keep praying she will just never get any worse than she is now. It bothers her legs to walk very much. As for the massages, I can't tolerate it. I've had several people try to massage my neck and shoulders, but it just hurts too much. My muscles always feel like they are deeply bruised. Even very gentle massage hurts. Keep taking care of your daughter and your support will really help her. I hope she knows that she is very, very lucky to have you! Linda D

Massages are wonderful! The trick is to have the person start it before you reach the point where it hurts too bad... I know that sometimes that is difficult...but if I feel myself getting "sore" I ask my husband to rub my legs before they get to the point of no return.

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~Luv, Scoobs~

Thanks for the advice for my daughter, my new friends. As a mother who doesn't have this, the feeling of helplessness when my daughter is in so much pain is agonizing in it's own way. Moms are supposed to fix their kids' hurts, right? I have some more questions, if you have time/energy to answer them. Has anyone heard that Paxil helps reduce pain symptoms for about 15% of people with FMS? I was told that today, but haven't seen it anywhere in all the literature I've been trying to read. Also, has anyone tried Sonata (zaleplon) for insomnia? I saw a couple of articles about it on the Fibrom-L Community home page. Thanks again.

Low dosages of anti depressants have helped some people with FMS/CFS deal with the pain management. Apparently for some it helps the person tolerate the pain better and also helps with sleep. I have tried three...Elevil, Zoloft, and EffexorXR ....I was not able to tolerate the adverse side effects and opted not to continue using them. But keep in mind everyone is different and what works for one doesnt necessarily work for another. FMS/CFS is a lot of trial and error and a lot of individualized treatment plans. Ironically,I have a 14 year old daughter who doesnt understand what I am going through.

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~Luv, Scoobs~

Originally posted by Elaine from Kentucky:
Linda (and everybody else!): Thanks so much for your concern. Haven't tried Prozac, but am on 50 mg. of Elavil (that's all I'm on right now). Doc says rheumy will probably put me on another antidepressant, which is fine with me, so long as it helps with the pain. I checked with a friend who goes to the same rheumatologist, and he has also given her Darvocet for pain. She couldn't remember what else she was on (he had taken her off Elavil after increased dosage wasn't working), but she was going to call and let me know. Yes, I am on AOL, My screen name is "kycabinfever". Today work was pitiful - had to work late and am very tired. I called my GP today, and the receptionist says evidently he has not talked to the rheumy for me yet or she would have called me. So, I wait...

My aol screen name is adnildav Linda D

Originally posted by ValB626:
Thanks for the advice for my daughter, my new friends. As a mother who doesn't have this, the feeling of helplessness when my daughter is in so much pain is agonizing in it's own way. Moms are supposed to fix their kids' hurts, right? I have some more questions, if you have time/energy to answer them. Has anyone heard that Paxil helps reduce pain symptoms for about 15% of people with FMS? I was told that today, but haven't seen it anywhere in all the literature I've been trying to read. Also, has anyone tried Sonata (zaleplon) for insomnia? I saw a couple of articles about it on the Fibrom-L Community home page. Thanks again.

Valb626 - Have you looked into any other alternative methods besides the massage? Could there be a possiblilty of a food allergy? Eliminating foods such as sugar, white flour, and dairy may help her. Good job using massage, you may want to look into Reiki and Polarity therapy. These modialities are not massage and work with the bodies energy system. Good Luck.

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FWIW - JMHO

Hi again. Yes, I've been thinking about possible allergies alot and my daughter has been on Allegra since the major migraine attack last spring, but now I just read on the restless legs topic that it makes the limb movement problem worse!! AARGH!! My stepdaughter, Katy's older half-sister, had major food allergies as a kid, including soy, citrus, wheat, corn, and you name it. We detoxed her off everything and slowly reintroduced things one by one and she was a different kid within 6 months, but trying to find replacement foods was a nightmare. With that family history, I've been thinking of doing something similar for Katy, but I keep hearing/reading about at least 70 different diets, so am not quite sure where to start. Probably with taking her off everything except organic fish/fowl and veges for a few weeks and see what that does. I don't want to do everything at once because then I won't know what is and isn't working. But allergies/diet sure seem like an avenue to try!!

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[This message has been edited by Elaine from Kentucky (edited 01-24-2001).]

Scooby,
You are right. After you mentioned that your worse times are in November, it hit me. Last November was when I hit an all time low and then of course last month. I am going to do some more checking in my pain journal that I keep and see if other times are cyclic. Right now with all the typing tonight on this board, my right arm feels like it is on fire. Will close for now and catch you guys tomorrow or the next day. Take care and gentle hugs to you all. It's a shame we all aren't in closer proximity and then we could help each other out in our down times.