Living with Fibromyalgia: Introduce yourself & meet others

@auntieneen what I would suggest to you is to call NORD or GARD. I put the links to the two non-governmental organizations in the discussion just above your entry. You could tell them about 32 years of fibromyalgia and now you’d like a good doctor. They could really set you on the right track.
What one thing would you like to learn from these doctors?

I might look into that!! Thank you!

I would like to learn my options for treatment, be it supplements, exercise, nutrition, pharmaceuticals, or other interventions. I would like someone who is willing to walk me through some trial and error. My GP just doesn’t have the necessary knowledge to help, and I haven found anyone in my area who does. I will absolutely get in contact with the organizations you mentioned. Thank you!!

Hi, I'm new to the group. Question does anyone with fibro have issues with your legs? As in stressed, burning, weakness, to the point of failure as in falling?

Welcome @traceysetzer1923, You are not alone with your fibro issues. There are many discussions and comments from members on fibromyalgia and problems with the legs. Here's a link that lists the related discussions and comments if you want to scan through them to see if it sounds similar to your symptoms - https://connect.mayoclinic.org/search/?search=Fibromyalgia%20and%20legs.

Has your doctor suggested any treatments that might provide some relief?

I have been living with fibro for 20 + years. I used to be on the monster roller coaster, not I am on the kiddy roller coaster. I have leg pain problems. I view fibro solutions as a tool box. When you have the pain you select a tool to address the pain event, if that one does not work, then select the next one. I start with focused breathing, then rub on relief or a infra-red heating pad, laying down with a weighted blanket, range of motion movements or stretched or a short walk, etc... Some your solutions are limited by where you are when the event occurs.

A doctor explained the fibro as the orchestra conductor misbehaving with your nerves being the musicians. You need to take back the control of the concert.

Cogitative behavior therapy helped me learn the focused breathing along with yoga classes.

Everyone's fibro management is different. Below are some of the things which have worked for me
Exercise: walking with trekking poles, yoga, body weight exercises and stretches. if you have a area with reoccurring pain, then work on strengthening and stretching that area. Fibro attacks you where you are the weakest.

Nutrition: lowering or removing the following items from my diet: processed meats, gluten, food dyes, artificial sweeteners, high fructose corn syrup. I am also focusing in improving by gut health by increasing my fiber intake.

Supplements: Vitamin D + K2 (3000mg per day) is an important supplement. I am most comfortable if my Vitamin D score is 60 or higher. Iron bisglycinate (25 mg) helps keep my energy level up. Again a test score of 60 or more is ideal. Magnesium glycinate helps town down the cramping and pain. Palmitoylethanolamide (PEA) (600 to 900 mg) helps reduce pain and inflammation. I can really tell when I do not take this one. The quality of the supplement mentioned before is important. Not all brands are created equal. I also do not recommend the use of tablets.

Pharmaceuticals: Naltroxne 1.5 mg twice / day and 10 mg of escitalopram twice a day, and 5% lidoderm patches and cream (put the medicine where the pain is).

other intervention: Infra-red heating pad, weighted blanket, cognitive behavioral therapy, yoga, walking with trekking sticks, rest

I hope this helps.

Hi, I am new too. I had the same question. Mine feel like they are cramping every time I stand up. Then it gets “better” but it’s always there. Just started happening with me too. I have been diagnosed with Fibromyalgia for 20 years but probably had it longer. I read some of the related posts. It reminded me of Epsom salt rub. I definitely want to try that. Taking baths is out since I would never be able to lift my self up! Someone suggested to me to get a tall bucket (5 gal) and soak each leg in one.

Hi, I am new here. Been diagnosed with Fibromyalgia for 20+ years. Before that was told I had Rheumatoid Arthritis but after a few years and a new doctor, determined that wasn’t true. Pretty much been white knuckling it since then. Things have gotten to the point where I need help. So I am meeting with Therapy Management Team pharmacist soon to discuss pain med options. Has anyone met with someone like this? Nervous about what they will say….mostly convinced myself over the years that no one would help me so why try???

I am not familiar with the term "Therapy Management Team Pharmacist." Is the pharmacist supposed to know more about pain meds than your doctor does? After you meet with the pharmacist, does your doctor consult with the pharmacist to decide what pain meds to prescribe? Please let us know the results of your visit with the pharmacist and what pain meds he thought would be best for you.