Hello I joined this website because my mama suffers from fibromyalgia. I always urge her to join community with people like her but she always refuse to. I joined this website in hopes of learning more about Fibromyalgia with its symptoms and possible treatments I can learn.
Hello, daughter109! I am very sorry to hear of your Mom’s illness as i would not wish this on my worst enemy. What a loving daughter you are, trying to understand.
If you and your Mom have not read Dr. Devin Starlanyl’s book on Fibromyalgia yet, it is the best overall text with great diagrams and explanations altho very sciencey.
For me the 3 worst things are having bad sleep due to pain = a bad day tomorrow before it even starts; the all-over pain when everything hurts all the time and no way to get comfortable; and the “fibro fog” mental confusion-difficulty that makes it hard to communicate.
It is hard not to focus exclusively on the fibro and lose track of everything else and everyone else. There are over 200 recognized symptoms of fibro and each of us has a different constellation so that makes us difficult for doctors to treat. Of the 200, i have about 73 over the last 25 years but thankfully not all at once.
I have hypermobility along with the fibro, which my doctor says they are “negatively synergistic” oh yay that’s more good news ; )
I prefer alternative treatments. Having spent 4 months taking Rxs etc as advised and only getting worse day by day, my husband and i talked about it and decided to stop. The only Rx i have now is low dose naltrexone which i think helps but is not covered by insurance and $55/month.
On days that i can, yoga helps, walking helps, stretching helps. Strenuous exercise hurts not only now but for 3 or 4 days longer.
I have a full size heated mattress pad under the bottom sheet that helps control my body temperature while sleeping.
Epsom salt soaks a couple of times a week. Massage when i can stand the touching and can afford it.
The life i used to have is gone forever. Thankfully i am retired, because i could not go to work now like this. And definitely could not do the job i had for 32 years as i was a computer programmer and my brain does not work that well anymore.
Not trying to discourage you, but there is no fixing this. There is only acceptance and learning how to live in this new different life.
And every single day is different so there is no predictability.
Many air hugs and good wishes to you and your Mom, RA🐢
My mom lives with fibromyalgia and had symptoms since her twenties. She’s 50 now but still she always tell me that she chooses “Mind over Matter”, she may have the illness but mentally it does not have her. Thank you for sharing me your story:) my mama also likes to run and sometimes I give her Himalayan salt massages. she says every medical or prescribed medicine never works for her. Nevertheless, I’m still searching for different treatments to do because their are many that works for different people.
Wishing the best for you both😊
I have found that 1600 mg of gabapentin works on my nerve pain and 100 mg of trazadone works well for insomnia and lifts my mood a little. I have been on 25 mg of elavil for one month and have gained 10 lbs so I am getting off of that and will only have the gabapentin to help with the nerve pain. I have recently been diagnosed with multi-level degenerative disc disease and it’s sometimes hard to know what the pain is coming from. But I am good for now.
None of the treatments (prescriptions) have worked for me. I do take tramadol every day but right now I’m using other things. Myofacial release massage, yin yoga, aquatic therapy, talk therapy, supplements and vitamins, weighted blanket, Epsom salt/baking soda/ lavender oil hot baths.
Two books I highly recommend:
The Fibro Manual by Ginerva Liptan (she is a Dr who has fibro and only treats fibro patients). The Roll Model by Jill Miller (detailed pictures and text to show you how to use yoga therapy balls to do myofacial release therapy on yourself).
Had a doc prescribe Savella 100mg twice a day about 5 yrs ago & it’s been a huge help in my pain. It does take awhile for the body to get accustomed to it but it’s the only thing that helped Rx wise. I do yoga, recumbent bike, & walk. Hot baths, massage, & cbd help also. There are still bad days but I prefer to focus on the good. Unfortunately for myself I have more things wrong than just the fibro. Prayer is the best thing that I’ve found for myself & Romans 5:3-5 have been a blessing. I pray your mother finds some relief!
I have had fibro 20 years.
#1. brain fog(experiencing the worst I have had in 20 yrs right now)
#2. severe pain over the entire body, always worse in the shoulder & neck
#3. lack of energy & stamina
I actually suffer from Vulvodynia - it would not be surprising if it is related to fibro there are 40 IDENTIFIED companion conditions that occur along with fibro. I have experienced at least 20 of them.
The only alternative treatment I found that helps at all is exercise. I finally started exercising a year ago, I was desperate, having not found any meds that offered even a small degree of relief. My goal was everyday(I missed very few days in the last year). I was doing 1 1/2 hours using A Total Gym & eliptical machine one day and 45 minutes the next day on just the eliptical. Using a gym is not recommended every day if you are trying to build muscle which was part of my goal. No it did not alleviate all my pain however after I worked up the to routine I describe, I did feel better, I would feel worse on days I did no exercise. I haved tried some of the alternative treatments you have mentioned.
Question 4. no over the counter drug has ever helped my fibro, I had great relief for about 6 years when taking Lyrica & Savella at the same time. However the Lyrica started causing suicidal thoughts and I had to discontinue it. Those two are the ONLY meds that gave me any relief. I will include a list at the bottom of all the different meds I have taken over the 20 yrs.
There is no comparison before fibro and after. I feel fibro is a living hell. After I was diagnosed I told a psychologist friend about it and she said “well at least it’s not something fatal”. I’m not sure that is a good thing.
I can barely go on right now and my primary is working on getting me admitted to Nashville Vanderbilt Hospital Rheumatology unit. They are supposed to be on the cutting edge of fibro treatments. They are connected to Vanderbilt medical school that does research. So they have treatments no one else offers. It is not an easy decision since I live 200 miles from there but they are literally my last hope. Here is the list of meds I have been on - the variety is huge - I was very fortunate and had a doctor that was willing to try off label use of medicines to help me find relief. Here is the list of meds(I may have missed some): Celebrex, Celexa, Citalopram, Cymbalta , Diclofenac Pot, Effexor, Elavil, Etodolac, Flexeril, Gabapentin, Klonopin, Lexapro, Lyrica, Meloxicam, Mirapex, Mirtazapine, Norflex, Paxil, Phenergan, Prozac, Savella, Serzone, Trazodone, Ultracet, Ultram, Xanax, Zanaflex, Zoloft
Your questions were well thought out, I hope this gives you some information.
Thankyou for sharing me your story. My mom also have vulvodynia and her doctor didn’t know about it. I try looking up CBD oil for her. You should review Jacob teitelbaum’s SHINE protocol. It goes over getting adequate sleep, hormones, treating illness, getting nutrition, exercise. Also my mom alaways tell me to have “mind over matter”. She tells me she has fibro but it doesn’t have her spirit.
Thank you for the info, I will look into them, my spirit is a little droopy at times but I am not one to sit on the couch feeling bad, i do most things whether i feel bad or not. i have a two week vacation coming up next week. i am hoping it goes well, never know how i will be feeling but it should be good just to get away.
Knowledge of this condition allows for absence of control around what to expect while you have no control over what is happening to your body!
Your a pretty special daughter to be gaining a better understanding of your moms illness so that you can support her!
I was diagnosed with Scleroderma in 1990 after a 6 month period where my body was deteriorating. I have Raynaud’s phenomenon which is related to my Scleroderma.
I had a great deal of pain, high blood pressure, pain in my joints, my skin was very sensitive and a number of other issues. I was symptomatically treated as my issues surfaced. On prednisone for a year and a half until I was accepted for experimental treatment.
Then in 2011 I was diagnosed with fibromyalgia.
I have had a terrible time managing my pain and taken various medications. I started working with a health coach and cut out wheat, soy, dairy, sugar and processed foods. I do not eat rice or potatoes ( exception sweet potatoes).
This has made a big difference in managing my pain. When I reintroduced wheat I started to have more intense pain and sensitivity so I am cleaning my system and eliminating wheat.
I am on a number of medications but nothing totally eliminates the pain!
I have learned to listen to my body and rest when needed, exercise regularly and minimize stress.
I hope that your mom begins to experience some relief!
I use a combo of lyrica and cymbalta along with zoloff at night to help with pain and stay relatively controlled with level 3 pain.