Hello!! I’m new to the community I just wanted to say hi and share a little of my story. I suffer from Fibromyalgia, I’m sure many of you can relate, I stay in constant pain, I deal with numbness, tingling, and numerous other irritating issues while dealing with Fibro. I would love to hear how others cope daily, and maybe I can learn some things and maybe there is something I can offer that may help you. Thank you, I’m looking forward to sharing with the community. 😊
Welcome. I do not have fibromyalgia but my oldest daughter has it. She has some pretty bad days. She is disabled with a deformed rt foot and on a Walker. Some days she hurts to bad to use the Walker. She refuses to get a wheelchair at the present.
But I do understand some of your suffering due go diabetic neuropathy all the burning pain and the pins and needles numbness.
Hope you are well.
I deal with fibromyalgia, scoliosis, neuropathy, carpal tunnel in the pain spectrum.
I also deal with cancer, heart issues and various other things.
I’m in good shape for the shape I’m in.
I take 500mg, prescription strength, naproxen twice a day. I also usually take a couple of Tylenol #3 at bedtime which help me fall asleep better. I also take 5mg of melatonin for sleep.
I also have fibromyalgia along with advanced degenerative disc disease with spinal stenosis. Some days are good and some are bad. Try to keep as positive as you can. I know it is hard but being positive will help. Warm look walking and gentle stretching like yoga helps but you have to start slow. I was diagnosed in 2001 and luckily had not had to go through years of doctors ignoring symptoms. It has been worse at times like within the first few years. And it has been better at times so that I could dance, hike,camp , ride a bike and play with my grandkids. Currently I am back more toward the bad side due to limitations in my mobility. I have balance issues and have had multiple falls. Gentle hugs for you.
I have Ehlers Danlos syndrome (EDS) causing fibromyalgia. I also have had an intractable migraine for 26 months now. I understand the constant pain, neuropathy, balance issues and sort of good / really bad days - with the constant migraine I really don’t have really good days. I was diagnosed with fibromyalgia in 1994 - back when it was not well understood. I wasn’t diagnosed with the EDS until 2018 so some of the fibromyalgia treatments through out the years since 1994 have actually made my joints more “floppy”. The older I get the more my joints are sliding around- especially my hips. I use smart crutches when I have a lot of walking to do. I have not been able to work since January 31, 2017, and being a workaholic type personality that has been really hard for me. Most days I can stay positive with my strong support system, but I still struggle some days. My only sibling was also killed in a car accident in 2017 (after I had to go out of work for the migraine) so missing her adds to the struggle some days. Without my faith I would have given up long ago, but I know God is in control so I don’t need to worry. I have learned it could always be worse. Stay strong and hang in there. This group is there for you if we can answer any patient-related questions you have.
Thank you, I will keep your daughter in my prayers 🙏🏾
Oh wow, I’m so sorry to here that, your dealing with a lot. I pray all will be well, and I will keep you in my prayers?🙏🏾
Thank you, and I understand those good and bad days, I try to do the norm also as much as I can, but in silent I am cringing from the pain. But I keep on going. Sending you my prayers 🙏🏾
Oh no, so sorry for your lost, I fully understand. You know if it we’re not for the faith of God I would be really crazy. But I know he gets me thru it all. Your right about the pain in the hips, and the balance, I go to gym and I exercise in the Silver Sneakers class and we work on balance, hand/eye coordination, and circulation, so it helps me get the exercise I’m lacking. I wish nothing but the best for you. I will keep you in my prayers 🙏
I can totaly relate to more than one diagnosis.
Hope your day is great. I will say a prayer for you.
I know the good, the bad, and the ugly days of of trying to cope. Also have lost 1 brother (heart attack) and 1 sister (stroke). Leaving 5 of us (4 girls and 1 boy) behind. Both of my parents also gone.
If not for my faith I would have gone crazy.
It gladens my heart to hear you say your faith has helped you through everything. Keep the faith for it realy helps.
Yes, knowing God is still in control is all that gets me thru. My parents are still alive, and were living 15 minutes from my sister (an hour from me) so she was their primary caregiver. Needless to say, I had to move them closer to me to keep up with things for them. They have not moved well, either!! My mom has Alzheimer’s so the move was very traumatic initially for her. However, I think if my dad would be more positive mom would have done better. They have now been there six months and mom is just now beginning to accept the move. Dad is still fighting, though - he’s a strong-headed German 😏. They have always had a strong faith (my dad was a pastor even), but seem to even be struggling to know in their hearts what their heads know - God’s still in control … parents aren’t supposed to bury their children, and that has been an awful blow to take for them.
Yes loosing a child can e devastating. My parents buried grandchildren and great grandchildren, then my brother. My dad passed away shortly after. I still think daddy died of a broken heart. My daddy was in business with my brother, they were so close. I thank God every day that mother passed before my sister because loosing my brother and daddy so close was very hard on her.
It has taken my daughter a long time to realy heal after her son (4 years old) was killed in a car accident. Mostly because she was driving. She had survivor guilt and to a small extent still dose. March 1 she falls apart for the last 18 years wondering what he would be like.
Family’s are complex but what would we do without them?
Praying that you and your family are blessed and well.
First off, sorry you too have this disease. Back when it started on me, most docs told me it was “all in your head”. Slowly it was recognized as a real issue. Fortunately I found a great pain doc who listened and helped me. I guess I feel that may well be your first step - find a good pain doc. All of us relate differently to the many meds available to help deal with this type of pain so don’t get too discouraged if it takes a while to find a combination that works for you.
I also have Fibromyalgia. I had numbness in my right foot. I think it was peripheral neuropathy. I take Benfotiamine 150 mg (Doctors Best) and Nerve repair Optimizer (which is 300 mg of R-Alpha Lipoic Acid). This seems to help with the numbness in my right foot. I also take HEMP OIL which is about 15 mg of Hemp extract and also MSM (Methylsulfonylmethane) for the fibromyalgia. I still have not found a good solution for the Chronic fatigue yet.
Hi I’m sixty-five i have problems with my legs not working right with hip joint pain. This is my main concern right-now some days i can barely walk. if i only lay down with no sitting it quit bothering me for a while . Until i sit. I cant do the things i like so do such as hiking. Most days I don’t want to do any thing because of the discomfort and depression. I don’t like my body much these days.
I don’t have fibromyalgia but I do have osteoarthritis and neuropathy. I know that my strength each day comes from the Lord
You are very welcome.