mrs artavia
@mrsartavia
@mrsartavia
Posts: 17
Joined: Sep 03, 2011
Managing fibromyalgia
Hello everyone, I am looking for anyone who suffers from fibromyalgia and can suggest healing methods, medication and I would like to compare symptoms. Mine feels as if I had the flu, headache, joint aches, terribly tired, pain around the glands, stomach pain, low back. If lyou can please write with any comment or suggestion for relief, or any idea what causes it I will appreciate it thank you.
robbinr
@robbinr
@robbinr
Posts: 108
Joined: Mar 21, 2016
Some of us are very sensitive to weather changes, foods, and even a drop in water intake can bring on a flair of “flu-like” symptoms. Sometimes it remits, giving me hope that if I continue to eat mindfully, attend to my stress level, sleep enough each night (ha) and keep my water up, I will have good days.
Yoga, Thai Chi, walking – these are all things that I can do. I probably won’t ever take up white-water kayaking, but I can gather “Joy Points” throughout the day and enjoy what I can. The ONLY thing that ever sent my symptoms completely away was a small dose of HGH in the muscles. I cannot find a Doctor willing to prescribe that for me anymore:{
1langla
@1langla
@1langla
Posts: 33
Joined: Apr 05, 2016
I think I’m sensitive 2 the weather.i do try 2 eat mindfully,drink enough water,sleep enough&attend 2 my stress.i walk 2 to 3 times a wk.2.Think I’ve heard of HGH.That’s 2 bad.But,when I get my Disability this weekend;I’ll buy some pot ointment.I’ve heard it’s suppose 2 be effective.Hopefully,so!get more sleep sometimes.
robbinr
@robbinr
@robbinr
Posts: 108
Joined: Mar 21, 2016
1langla
@1langla
@1langla
Posts: 33
Joined: Apr 05, 2016
jharsh
@jharsh
@jharsh
Posts: 18
Joined: Mar 28, 2016
My initial symptoms for years were an electric fence feeling and extreme fatigue through my entire body. Diet, exercise as part of a low low level strict routine helps me most. Tai chi, yoga, swimming, walking all work for me. When I go for a walk as I find myself in pain I feel better. I also had to lower my expectations of myself I adjusted better. The mental challenge of denial and all associated to appear cyclically and the biggest challenge for me. Mayo docs encouraged self management and staying off of meds. After a couple of years I completely understand. I’m considering a class they offer to learn how to deal with pain. Maybe this would help you. I also continue to fight the urge to treat symptoms.
Liked by Colleen Young, Connect Director
robbinr
@robbinr
@robbinr
Posts: 108
Joined: Mar 21, 2016
1langla
@1langla
@1langla
Posts: 33
Joined: Apr 05, 2016
robbinr
@robbinr
@robbinr
Posts: 108
Joined: Mar 21, 2016
I realize that I did not answer what CBD stands for. Cannabidoil is an extraction from a strain of Hemp plant that is very soothing to sore muscles and does not get one “high” at all. I have heard it is even being offered in main-stream body product stores, but I prefer to go to the “Pot” shop for it because I can be sure that they don’t use any harmful emulsifiers. Sometimes, I wish I could just bathe in it. It doesn’t have a smell, or a burn, it just stops the pain.
There are Fibromyalgia and Fatigue centers, but very expensive. It requires a lot of blood work. Many people who develop sudden onset of Fibro symptoms actually have Lyme disease. Most of us have “yuppie flu” that started showing up in the early 80s – I forget the clinical name for it, but it is related to chicken pox, works it way into your nervous system and is opportunistic when we become tired, eat badly, overstress, don’t sleep. Since most of us have a disrupted sleep pattern, it is hard to not be tired. I find that D-Ribose with magnesium malate can be very helpful.
Just beware, there is a lot of snake oil being sold as “cures”.
1langla
@1langla
@1langla
Posts: 33
Joined: Apr 05, 2016
@robbinr I realize that I did not answer what CBD stands for. Cannabidoil is an extraction from a strain of Hemp plant that is very soothing to sore muscles and does not get one “high” at all. I have heard it is even being offered in main-stream body product stores, but I prefer to go to the “Pot” shop for it because I can be sure that they don’t use any harmful emulsifiers. Sometimes, I wish I could just bathe in it. It doesn’t have a smell, or a burn, it just stops the pain.
There are Fibromyalgia and Fatigue centers, but very expensive. It requires a lot of blood work. Many people who develop sudden onset of Fibro symptoms actually have Lyme disease. Most of us have “yuppie flu” that started showing up in the early 80s – I forget the clinical name for it, but it is related to chicken pox, works it way into your nervous system and is opportunistic when we become tired, eat badly, overstress, don’t sleep. Since most of us have a disrupted sleep pattern, it is hard to not be tired. I find that D-Ribose with magnesium malate can be very helpful.
Just beware, there is a lot of snake oil being sold as “cures”.
Oh.But,being less spendy’s 4 me 2.Blood work’s only thing.They usually have trouble finding my veins.Don’t know if I’ve that flu.But,I do have sleep issues(Don’t usually get enuf.)&trouble with stress.Yes.Thx!
1langla
@1langla
@1langla
Posts: 33
Joined: Apr 05, 2016
@robbinr Sometimes, the day starts OK,. I feel like I have the energy to accomplish at least one major project I’ve already started.
Then, I don’t know, I just fall apart with exhaustion and lethargy. I do not feel like me anymore. Maybe a shadow of me.
Makes sense.Take care.
disgusted
@disgusted
@disgusted
Posts: 35
Joined: Jul 20, 2016
I have concluded that most ailments that are diagnosed as being fibromyalgia are not autoimmune diseases at all and that rheumatologists are generally surprisingly inept at treating most forms of the disease. I got way better treatment from my general physician than anyone else. I made three trips to Mayo Clinic and the folks there never even were able to diagnose me properly, much less give me any effective treatment. One doctor glared at me and said, “Nobody every died of pain. Just go home and get over it.”
disgusted
@disgusted
@disgusted
Posts: 35
Joined: Jul 20, 2016
@jharsh I am 50 and was diagnosed with fibro a year ago at Mayo Clinic in Rochester. The first thing I got under control was sleep. Generic Lexapro was prescribed after my PCP at home was confident I didn’t have other sleep disorders. I have proven to myself this works best combined with adding a soak in an ultraviolet half sauna as part of a pre-bed nightly ritual.
After a year I finally have more days not in denial. I have been trying to improve my eating by focusing on what to eat. My cholesterol is ultra high (up to almost 400 at times) and I am trying to control it without meds at this point. I started with 3 fruits a day, 2 veggies at each lunch and dinner, fish once a week, eating out no more than once a week.
I started walking 5 minutes every other day a year ago and worked up to 30 minutes 4/5 times a week now. I continually fight myself on routines but have proven to myself that if I could focus on one thing only that us key…it is to drill the word “routine” into every fiber of my being. It’s hard. At times I just want to be defiant to the whole idea.
I finally changed jobs to something manageable long term. I worked full time managing a call center for a magazine company. I was patient to find a part time accounting job that fits me and it had taken since the first of the year to adjust. Against, routine.
I started yoga once a week faithfully a year and a half ago. After a while a realized its value. Routine! I’ve tried swimming and tai chi, both I see will be great but I haven’t been able to regularly incorporate them yet. I could tell it’s too much.
I started chiropractic on December and added massage to compliment. It’s been painful but improving my shoulder, neck, hips tremendously. I’m trying to find a sweet spot as far as scheduling frequency right now.
Pain became horrendous lately. It came on suddenly and now Jeff just as much so. It is always something, as other normal symptoms have taken over. I want to get a handicapped parking permit for that one day in many that the walk in our parking garage is oh so tough. I want to purchase a cane to have at home for those times when my walking is unstable and my knees buckle without warning. I put it off though because I’m fearful its acknowledging defeat in one battle of this war in my body. I plan to discuss it with my PCP next month.
My doc at Mayo is recommending magnets and acupuncture to try.
You really need to find something that works for you. There are a lot of things out there. In my experience three trips to Mayo Clinic was a complete waste of my time and hard-earned money. A good local GP was much more effective and I have been able to function normally for the past nine years as a result.
disgusted
@disgusted
@disgusted
Posts: 35
Joined: Jul 20, 2016
@juneia What you describe I know very well. Just once I would like to wake up without pain and not feel I could do with more sleep. Thankfully my doctor tries his best. I have restless legs also with all the other things you have. My doctor prescribed Sinemet for my legs. It is a Parkinson medication-but I can still get where my legs jerk and the pain is terrific. So the best thing I have is a narcotic. If I don’t take pain meds. to go to bed I am up trying to walk the feeling off and waiting for the pain meds. to take effect. Depression is a hard thing to manage so I have antidepressants too. My doctor feels that older people don’t seem to get addicted as quickly younger people do. And what the heck at 86 what does it matter. Although I haven’t so far. My children think I should try medical marijuana but my doctor says the pain killer I have is better for me.One thing I have found out when in pain rocking myself back and forth on the bed helps. Also I have knelt down as in prayer and put my head and shoulders well up on the bed and actually slept. I can’t get in and out of a tub but before when I could use the tub I have found relief of pain just lying in the warm water. Fibromyalgia is a miserable thing and can be a handicap as far as having to work. I keep saying to myself I am glad it is not cancer.It doesn’t help the pain but –you try anything when you have Fibromyalgia. It is the tiredness that beats you even if you have killed the pain. I just know some days I will have to sleep all day and then go to bed and sleep all night. I haven’t helped much but it helped to talk about it. Take care. By the way Lyrica caused me more pain and I was really depressed. Scary.
I second your recommendation for gabapentin. It has made all the difference in the world for me. I am taking the same dosage as you.
robbinr
@robbinr
@robbinr
Posts: 108
Joined: Mar 21, 2016
@jharsh I am 50 and was diagnosed with fibro a year ago at Mayo Clinic in Rochester. The first thing I got under control was sleep. Generic Lexapro was prescribed after my PCP at home was confident I didn’t have other sleep disorders. I have proven to myself this works best combined with adding a soak in an ultraviolet half sauna as part of a pre-bed nightly ritual.
After a year I finally have more days not in denial. I have been trying to improve my eating by focusing on what to eat. My cholesterol is ultra high (up to almost 400 at times) and I am trying to control it without meds at this point. I started with 3 fruits a day, 2 veggies at each lunch and dinner, fish once a week, eating out no more than once a week.
I started walking 5 minutes every other day a year ago and worked up to 30 minutes 4/5 times a week now. I continually fight myself on routines but have proven to myself that if I could focus on one thing only that us key…it is to drill the word “routine” into every fiber of my being. It’s hard. At times I just want to be defiant to the whole idea.
I finally changed jobs to something manageable long term. I worked full time managing a call center for a magazine company. I was patient to find a part time accounting job that fits me and it had taken since the first of the year to adjust. Against, routine.
I started yoga once a week faithfully a year and a half ago. After a while a realized its value. Routine! I’ve tried swimming and tai chi, both I see will be great but I haven’t been able to regularly incorporate them yet. I could tell it’s too much.
I started chiropractic on December and added massage to compliment. It’s been painful but improving my shoulder, neck, hips tremendously. I’m trying to find a sweet spot as far as scheduling frequency right now.
Pain became horrendous lately. It came on suddenly and now Jeff just as much so. It is always something, as other normal symptoms have taken over. I want to get a handicapped parking permit for that one day in many that the walk in our parking garage is oh so tough. I want to purchase a cane to have at home for those times when my walking is unstable and my knees buckle without warning. I put it off though because I’m fearful its acknowledging defeat in one battle of this war in my body. I plan to discuss it with my PCP next month.
My doc at Mayo is recommending magnets and acupuncture to try.
How nice for you that you had a competent GP! That is often, in fact, rarely the case. First, they think you are a nut case, then they think you just want drugs. I have found over the course of my now 30 year journey with the diagnosis of Fibro – Drugs Rarely help. You have to find the thing that broke you in the first place, then fix it. I know it sounds harsh, but adding a plethora of chemicals to an already compromised system just confuses and be fuddles the brain. Pain is just pain…find the mantra to deal with it, and move on to a better state of health. Doctors often know shit about why some people hurt and others don’t. We all experience pain in an individual way.
Remembering that Pain is just a sensation that your mind can overcome with mindful attention is a powerful tool.
Liked by Colleen Young, Connect Director
@jyth
Hi! I’m so happy to hear from someone else who has these symptoms. i seem to feel worse with barometer changes, especially downward. I also get vertigo, nausea, irritable bowel and bladder along with all the symptoms you listed. I’ve been talking with my doctors for a year now about this. They just don’t seem to have any answers. From the research I’ve done it seems all they can do is treat the symptoms. I’ve been taking 2 prilosec every morning. It has reduced the stomach pain but not the nausea, which I have everyday. so PCP has finally agreed to send me to gastroenterologist. My sister who also has Fibro has stomach issues as well and her gastro doc gave her different meds that seem to work. She lives too far away for me to use her doctors. Fortunately for her, she doesn’t get the complete heavy flu symptoms but gets enough of it. Good luck!