Hi my names Rosie, I was born with a club so have also had to deal/learn what I can and can’t do but to be honest now being diagnosed with Fibromyalgia, I’m kinda finding it very difficult as there seems to be no balance I can feel like myself that I’m use to then suddenly I’m in so much pain in my legs I can’t even stand. I know my other conditions doesn’t help but be nice to hear what others do that comfort them when it gets bad I guess. I’d try anything and be nice to talk to someone else that knows what it’s like. I have a very good partner that does his best to help me and try make me comfortable. Thank you to anyone/all that reply to this. X
Welcome Rosie! I was diagnosed about a year ago. The learning curve was pretty steep but I’ve slowly found what works and what doesn’t for me, which is different for everyone.
I’ve tried cbd oil and topical creams, cymbalta, lyrica, opioids of all kinds, gabapentin, magnesium malate, hot Epsom salt baths, ice packs, heating pads, warm water joint therapy, staying away from sugar, staying away from shade vegetables (peppers, tomatoes, eggplant). One thing I haven’t tried, which a lot of people say is helpful, is eliminating gluten from my diet.
The only thing that works for me from that list that I have tried are: hot Epsom salt baths with water jets (big help), heating pad (helps about 50% of the time), warm water joint therapy classes (great!), magnesium malate (I think). Two of the biggest helps by far is getting good sleep and stress reduction!! High stress/poor sleep brings on a flair like nothing else! I’ve had to really adjust my lifestyle, set boundaries with friends and family (I just can’t do all what I used to do and sometimes have to cancel plans at the last minute).
You will find what works for you. It just takes time. Be open minded about trying new things.
I’ve done the CBD oil as well, I found it didn’t work for me, I’ve just come off the gabapentin, now waiting to try pregabalin ( that helps). I also find salt baths really good, I’ll be definitely asking my doctor about warm water joint therapy classes. I’m also going to see if my doctor will give me something to help me sleep as I’m the same, so much worst when I don’t have a good night and stress I think that one is the killer but I can’t seem to escape it lately . This sounds so daft in away…I managed to cook my partner breakfast and lunch and it felt nice, tired me out but made me happy lol. I’ve been trying to stay away from gluten and lactose but it’s so expensive. Thank you for your message, ment a lot x
Welcome Rosie! I don’t know if I can be much help, as although I have been dealing with muscle/joint pain, fatigue, memory issues and all the rest of the health issues for over 12 years, I have yet to receive a diagnosis. Unless you want to count the one I got recently - “just severe arthritis - learn to live with it” - which doesn’t begin to explain all the issues. For me stress, cold and weather changes are the biggest triggers that I have been able to pinpoint, though they are not the only ones.
I wanted to welcome you though and say “Hi!”
I agree with Debstinydogs - you will eventually find things that help you; and each of us is different. For me, I’ve mostly tried natural remedies until recently (due mostly to the church I was in during that time) and had little that helped. Hot Epsom salt baths helped the most I would say and I really miss those, but where I live now doesn’t have a tub. I am trying a heating pad now and that helps sometimes - depends on the severity of the flare and how widespread it is. Sleep would probably help but well it’s in short supply way to often. I didn’t have much luck with the muscle and pain creams really - although I can say that with some of them, if you put enough on - I guarantee it will give your mind a different sensation to focus on! Especially if you use something like biofreeze or icyhot that feels cool when first applied and then warms up.
I have tried various restrictions to my diet - gluten free (1 yr), dairy free (3 mo), lactose free (3 yrs), caffeine free (5 yrs), but have not noticed any difference. I wouldn’t have minded them so much if I had seen improvement, but like you said, they are expensive. But they are maybe worth trying - some have seen improvement with them and if it helps it would be worth it.
Mostly though I am still trying to figure out what works for me.
Hi StrugglinginKs, thank you for yor message. I apologies for the late reply, i caught the flu . “Learn to live with it” that’s disgusting to say, i really hope you end up getting the help\suppport you need from health professionalssoon
I’m with you both on the salt baths, the only problem i seem to have is once i get out of the bath i dont normal get more than 5-10mins before i feel the way i did to make me get in the bah :-|. Ye heats good, i find slight cold plays me up and i never use to get cold lol. Sleep has only been an issue for a few weeks (in that respect i have been lucky) i feel for my partner tho as im a right when i don’t sleep lol. I use a muscle\pain cream every night i don’t think it works how it should, i think it more sooths me as my partner rubs it into my back, i believe it that that comforts me.
I mainly do try to stay away from gluten, dairy and lactose as i do find I’ve suddenly got every sensitive to them, expressorly cheese is the killer for me (& i had to be my favourite .
Thank you for taking the time to message me.