Has anyone been told they had resistant fibro? I'm not able to get any relief as all meds make me too sick. any suggestions ?
Hi Coyene, I have never heard of resistant fibro, but I do know many , if not most of us are very sensitive to meds. There has been many discussions on that very topic…
I’m going to look this up.
a lot of us have resorted to natural supplement, whole food choices, diet restrictions, as well as many other form of treatment including, massage , pool Therepy , yoga, mild exercise… The list is long of things people have reported " as helpful"
Send this question to Allergic, I think she has a lot of info on med resistance, natural & diet changes, I will ask her as well.
Hugs & blessings
dee
Hi coyene!
This sub-group of fibro will connect you with the members who are on the natural end of things. I am a heavy duty AMA meds patient, but still find these helpful! I hope that you will find some answers here!
thank you ll check it out I'm just about at the end of my rope at this point ill try anything
Have you ever tried white willow bark for pain? If you are aspirin sensitive, it is not a good choice, and if you get cleared by your Dr to try it, always eat with it, even if it's only a cracker, to prevent stomach upset or eventual ulcer!
Another idea is that nearly every good health food store has someone in the supplement aisle who is very knowledgeable, who has at least one good reference book on vitamins and herbs. I mean they are very impressive, and worth a shot.
A Chiropractor is another who is a master of vitamins. They know vitamins and supplements like a General Practitioner knows medicines. Being adjusted may help also, all Chiros are also licensed Physical Therapists who can determine if a specific exercise can help you, and most have a licensed massage therapist in the office. Mine has kept me on my feet for years now!
Is your pain mostly nerve, muscle, joint, bone? Which type of pain are you dealing with, coyene?
Rheumatologist. Told me to exercise, pcp says physical. Therapy,and pool therapy, but it like i hurt more each day
Before my diagnosis, this was given to me by my Chiropractor, there is a regular and a PM to help relaxation for sleep. They did help a little, I also have autoimmune arthritis, besides Fibro, so they may help someone who does not have the joint and bone pain more.
Always check with your Dr before adding these supplements, and know that I am not a medical professional.
I will and anything else I remember, or come across for you!
Wishing you well,
SK
My mother has this type of fibro. Nothing helps with the pain.
Morning. I have started using Power Strips. All natural indgredients and very reasonably priced. Helps with pain, energy, mood and brain fog. Any excercise in the pool seems to help relax my muscles and sleep at night. Take Care.
Live, Laugh, Love
Here's the thing about fibro. We do not know much other than it is a central nervous system disorder. Beyond that, we do not know how we get it, how to treat it or how to get rid of it. The ONLY OTHER THING WE KNOW IS THAT WE HAVE TO FIGURE OUT WHAT WORKS FOR EACH OF US. That search is the best thing you can do for yourself. For me, moist heat and massage are the two best things for immediate relief. Medium relief involves using my body to MOVE. Our bodies are not meant to be motionless and fibro makes us want to stop moving. However, that is the ABSOLUTE WORSE THING YOU CAN DO. I hear water aerobics works incredibly well.
Beyond that, there is education (go to the NIH website and and then to NIAMS - they have tons of info on fibro), talking with other people with fibro (support groups), keeping up on your health in terms of regular check-ups (everything from dental to OB-GYN) to make sure you are not letting thing go and more importantly, so other things do not get lumped into the diagnosis of FM.
I will tell you that it took me almost two years to figure out what I have shared here (then again, the early 1990's was not a period of time which had a wealth of available info). That is the challenge - to figure out what works for you. If you don't, then nothing will work for you (including medications and doctors) because FIBROMYALGIA IS NOT A PASSIVE CONDITION. You cannot sit back, pop a few pills and feel better.
Aloha Coyene: You should go to a chronic pain specialist. Since you cannot take medication; I'm guessing orally, maybe you could maybe consider getting a joint nerve injection. I'm going to have this done on Tues. and I'll let you know how it goes. Hopefully, I will be pain-free. Everyone is different; so I don't know how long the relief will last. Also, the other comments below are good ones. Most of us do not feel like exercising when we are in such pain, so what I do is water aerobics. It is a wonderful way to exercise and yet, not feel pain since you are weightless. I try to go as often as I can. Of course, if you can get a massage without it hurting, that is a good suggestion as well. Have you tried acupuncture or going to a chiropractor? I've done both, but it didn't really help me, but it does for some people. Other suggestions is a Ten's machine, reiki and hypnotism. I feel for you, as we all do. You have to keep experimenting with different things until you find something that helps you. It's a long and frustrating battle.
What an interesting question! Is your pain, nerve, muscle, joint or bone? So much for the label of fibromyalgia, just goes to show what a misnomer it is. barb
Hi coyene
resistant to what medications I wonder?
Well I have found that nothing removes the pain, never for one moment has it lifted. I have tried most meds.
water therapy made me 100 %worse.
I simply shape my day by doing most things early in the day and resting from lunch time,but I also walk for ten minutes every hour for six hours each day. That stops me from getting that dreadful stiffness.
Hope that helps. Barb
Never heard it called that but i cannot take lyrica or savella. The two fibro drugs...lyrical being the mainstay. My pain doctor finally said why do they keep making you try and take it when it makes you very sick...good point. SO no more. I have tried motrin a few times when pain was bad..and did help like i figured it would. But i cannot take it as my stomach is too burned out from it.
I do many other things though like baths, have massage machine i use nightly that does help with hip pain and shoulder...i need about 3 of them though really. I agree that just try things other than pills. In fact i just saw diet that says it is for fibro but have not yet read article...i seriously doubt it as so far on other things i have wrong no diet has helped....eat healthy and organic including meat //fish ....check on Monterey aquarium about what fish to eat be it high in dangerous substances or it is going extinct or will be shortly.
Problem with alternative stuff that Dee says....all costs money out of your pocket....i can say this..having money helps if you are sick!! lol but it does not make you happy nor can it cure you!!
I have been told that I have severe fibro but I have not heard of resistant fibro. Have you asked the doctor what that means and what is the best way to approach it?
There are not many meds for fibro.. I have been on gabapentin and could not take it because of side effects.. my insurance did not cover lyrica so I could not afford it.. I'm not sure of many others except pain killers and meds to manage symptoms..
Lyrica also has side effects, so I wouldn't worry about that. Although I take gabapentin, I also take pain meds. I am also on a muscle relaxant. What did the doctor suggest as a next step?