Been diagnosed with fibromyalgia

[Domi1041]

Hello everyone!i received my diagnosis a couple weeks ago by a rheumatologist. I wasn’t surprised and it explained a lot! However I’m finding right now the hardest part is explaining to people and removing the added stress it gives you when people look at you disbelieving because you look fine!i don’t want to be moaning constantly about the pain I’m in or how fatigued I am ect, but sometimes you feel you have to tell people otherwise the assume your fine!its like a lose lose situation! You moan all the time about it all and people find you annoying and unenjoyable to be around ,or you put on a brave face....focus on positives and people think you were putting it on all along!!how do you guys go about it all???i feel my closest family understand most of it but if I put on a brave face they assume I’m having a good day and forget that it was a real effort and hard work for me to just be around people sometimes trying to fit in and be “normal”!then again maybe it’s me...and they don’t think that at all but are trying not to mention about it to make me feel better...I don’t know haha!just wish there was a way to prove everyone believed you and appreciates how hard things are then I could put on the brave face as much as possible and focus on positive thinking!has been very hard going from someone who has always kept up with the boys...always liked a challenge (I completed the “fan dance “only a couple years ago and represented the Royal Navy powerlifting)to finding even yoga basics so painful! I’m trying to convince myself to make the best out of a bad situation and maybe get back in touch with my feminine side and pamper my self regularly and taking things easy and enjoying the simple things in life. I love to walk (disputes now being in pain all the time)I still make my self with my dog. Simple things like the views and the birds singing is what I find pleasure in now and seeing other people happy!i can’t drink any more as alcohol does not agree with my body, and I’ve learnt the hard way who true friends are and who “drinking friends” are as soo many of these “friends” have lost contact with me !not even asked if I’m ok!!?!?sorry to blabber on just wanted to get it all out!im currently on amitriptyline for sleep but not helping much and omeprazol for IBS ,levothyroxine for my thyroid condition and vit d supplements . I have a very sensitive tummy and can’t even take ibuprofen so one category of drugs is already out the window for me but be suggested trying pregabalin or gabapentin!but very worried about side effects!?any one got any advice!?!also is anyone around weymouth Dorset area!??

Thank you soo much for taking the time to read

Xxxxxxxx

[Hidden]

In one sentence- avoid people who put you down, call you names/label you. I am no where near Weymouth, gabapent and pregab are harsh on anyone wether they have a stomach condition or not, have you got a physio helping you with excercise to keep you walking?

[Domi1041 in reply to Hidden]

Thank you for reply!no I don’t have a physio but have started yogo on my own..a couple times ..was very hard but going to keep it up as hopefully will just take time!k walk with my dog a few times a week too!yes I know I’m trying to remove those people emotionally from my life now as don’t need the stress!its amazing how powerful the mind is and how much less stress you can have In your life by training it properly and to successfully end stressful friendships/relationships with no emotional ties!xxx

[Hidden in reply to Domi1041]

Hi again- I was diagnose 17 years ago now and I have trialled an erred many options for pain relief, the best was on board with a physio who knows about fibro (some dont) and could possibly refer you for some hydrotherapy, its a bit like the ground excercises you are trying but you cannot feel what you are doing,it helps to lose weight, and you will meet knew friends who have similar illness to you, they will prove to be a better support than ignorant people.. I sometimes try a mild Palates-muscle stretching is needed with fibro to try to keep them pumped up a little which does help reduce pain. once you,ve been going to hydro you will love it or hate it (not met anyone who hates it yet) be careful with yoga unsupervised you could get ambitious and hurt yourself..

[phlebo123]

Hello, totally understand what you are saying, I could have written the same words myself! I don't waste my energy trying to explain to people anymore, I save what little energy I have for doing things I find beneficial. I enjoy walking my dog (short walks!) I am happy in 'my own company' now, appreciating fresh air, nature's wonders, and I also find yoga (I go to a class once a week) and swimming relaxing. I can no longer drink alcohol, it makes me feel ill. Have you thought about joining a local fibromyalgia support group? There may be one in your area, where people understand how you feel, without expecting lots of explanation. Take care xx

[Domi1041 in reply to phlebo123]

Thank you for understanding means a lot!and nice ..but not nice for you to hear someone else has gone through similar situations!!atm money is a big worry for my future as I am going to be going to a medical board to leave the navy soon and I really don’t have a clue what job I’ll be able to do ...as physically and mentally I’m pretty useless to put it blunt and cannot imagine doing a full time job and it working!!!im downgraded in my job atm so doing next to nothing and technically only 4 days a week!so money for doing things like swimming and yoga worries me as got a mortgage to pay ect ect !can you get hydrotherapy through nhs??as I will be transferring to Civilian drs when I leave??i will also try and look for local support group!i would love that!is there any particular search engine for this or simply type in “fibromyalgia support group weymouth”?xx

[phlebo123 in reply to Domi1041]

Yes, I think a lot of others have experienced something similar, so I have realised it is best to "move on" and do what is best for you!! (Sounds a bit selfish, but then only you know what you are feeling and what helps you feel a bit better!) I think your doctor may be able to refer you for hydrotherapy (it probably depends on your local health authority) but I think you can only have about 6 sessions on the nhs. I just go to my local pool (I choose one of the quieter sessions) and swim at my own pace (slow!!), the water is so relaxing. I think there is a list of contacts for support groups on the fmauk.org website, or as you say you could just "Google". Your doctor or local hospital may know of groups also. I manage to work part time (I do 4 X 3hours shifts, which I can manage), fortunately my husband works full time so I don't have to worry about the mortgage. My fibrofog, does affect me a bit at work, but as I have been doing the same job for 24 years, I do rely a bit on "autopilot" mode!! I can't imagine trying to learn a new job, I would get very confused, so I hope you find something that is suitable for you. Since you seem to enjoy the "outdoors", perhaps you could find something along those lines. Xxx

[Bennny]

Short answer on people not understanding - forget trying to educate them they don’t understand, they don’t care, they don’t want to know. EG I visit my grandchildren for a day a month and have to lie in the couch for an hour or so to keep myself in the room and socialising with them. My daughter-in-law doesn’t like it and doesn’t care or understand and she is a doctor! Forget them all and live your life

Amytriptyline, take it at 8pm and don’t drink anything at all before going to bed at 10pm keep doing that and it will get you settled into a routine of getting a good night’s sleep.

I’ve beentold on here by someone who said they couldn’t possibly do that - the answer - carry on suffering 🙄

Best of luck

[Domi1041 in reply to Bennny]

Hey benny thanks for your reply!!yes totally agree with you all on that one....you have to be selfish in some situations to be truest happy!dispite no wrong doing just other people’s ignorance!!i have been taking amitriptyline for sleep 25mg and did initially help and I could at least get to sleep but then wake up restless for rest of night around 2am. But has suddenly taking a u turn and back to square one. I think it’s because and excruciating pain I use to get on and off in the middle of my back is now there every night on and off!(so painful even a breath in hurt terribly).ive asked for more so she’s given my so 10mg on top of 25mg to play with!so tonight will be my first on 35mg.me and my partner go to bed usually at 9 sometimes earlier so we always have an early night xxx