Hello, is anyone here?

[Beater]

I've been on this forum for a while but I never see any posts and all the older posts have been left unanswered. Can we get this moving again as I and many others are in desperate need of support as we are suffering and could use some tips on what others might doing to mitigate their pain. Please this is an important topic.

[edythe]

Hi Beater,

I understand that you want to find and answer posts on your specific problem and it must be very frustrating not to find anything helpful. I think though if you looked at „Pain Concern“, which covers wider pain issues, you might find some help. I too have myofascial pain and find very helpful posts on „pelvic pain“. Maybe it’s worthwhile taking a look at one of those.

All the best.

[Beater in reply to edythe]

Thank you so much for responding. I will take a look at those groups. Thanks again, I really appreciate your response.

[Galaxies1]

Hi I've just joined. I do hope the community is still active as am as you say seeking guidance. 🙏

[Beater in reply to Galaxies1]

No I have not received any other replies other than the one from over a year ago and as lovely as it was my issues are not with pelvic floor. I'm in worse shape now than ever. I really can't seem to find adequate medical care or support. Perhaps we can help each other?

[Galaxies1 in reply to Beater]

Hi that's a shame. What kinds of things are you going though?

I've got chronic all over body pain due to lung fibrosis ( they said terminal) and also an auto immune condition that destroys muscles. I can't do most meds due to allergies so always looking for ideas to manage pain.

And you?

[Beater in reply to Galaxies1]

That sounds awful. Terminal? Are they certain? I also have chronic back pain which stems from open heart surgery and bad meds that I couldn't tolerate. Then I was bedridden because of the meds and my back atrophied. I have been on so many meds that I can't tolerate and currently withdrawing from pregabalin which made everything worse. Do you use anything for pain? Are you on any meds? I was misdiagnosed and mismedicated and had to go through terrible withdrawals to get off of the meds that they keep trying to put me on. At the very least we can support one another as it's so very difficult to be constantly isolated. No family and all the "friends" left when I got sick. I had nothing to give so they had no more to take. Hard lessons to learn. I might not respond quickly as it's difficult for me to use my computer and phone. Sending you some much needed hugs.

[Galaxies1]

Hi I really resonate with all you write. Including the pain meds saga and what an impact it can have making things worse plus people not listening. Isn't it truly staggering how people walk away when you're no longer deemed useful or fun to them? I'm sorry this happened for you also. It's been very eye opening.

Thank you for the hugs. 🌸

I was in hospital for months where I lost weight and was bmi red also got a bone infection, stomach infection and lost the use of my right arm and overall mobility. Then was sent home to pass away. I also couldn't tolerate the cocktail they wanted me on so they had no options they said. I had awful side effects to even the lowest doses. I'm still holding on but it's getting harder which is an understatement. Hence finding this site looking for some relief.

Are you able to access physio/ treatments for helping the body? Massage? Have you tried Tens machines? Or any essential oils? That's not the magic cure but to ease the distress at all? Does moving a little help at all? I find sometimes it's helpful but other times it makes a flare worse.

Same I'm not always online and often in too much pain / not mobile. Sending you much strength kindness and good thoughts. 🌷🌷

[Beater in reply to Galaxies1]

I just read your comment in another mutual group that we are in. I am following you and will send you a private message. It's actually quite astonishing.