Hey all Fairly new to fibro but after research I think I've had this since being a child.
I get frustrated daily with my pain and not being able to get things done.
I really hope I am seen by a specialist soon as I've had absolutely no help or support - here's hoping.
I hope to make new friends or just to talk about the condition & experiences 🙂
Hi, I'm not diagnosed either... I have hypermobility but don't believe the pain and everything that's declined in my health in the last few years is hypermobility alone even though that's always blamed... I don't.know if it's possible to have both ... Good luck with specialist's... Here if you want to chat about anything
If you don't mind me asking what symptoms do you suffer with ??
Hey 👋
I have a list of 23 symptoms so far - things are starting to click in to place where concerning some symptoms and some events that have happened in my life - let's just say fibro explains my entire life.
As for a diagnosis 3 doctors have said its fibro and physio whom I only saw once absolutely pointless.
Been on the list for pain management through the hospital for 2 years now and rheumatology since oct and doc said it'll probably be a few more months ive not been sent for scans to rule other things out had no support nothing been dealing with these issues since 2019 alone 😒
Ive not heard of hymobility.
Hey 🙂Hypermobility is when the joint in the body hyper flex (more flexibility and bend more then the average person)
Ive seen a physio who referred me to a surgeon for a ruptured tendent (no injuries.. no idea how I done it)
Then was told I needed surgery but I'm Hypermobile and could make my issues worse, 😔 who referred me back to physio who referred me to a specialist physiotherapist who done a load of tests and sent me back to the normal physio, who's referred me to rheumatology.. which I'm awaiting for now 🫣🤐🤨🥺
Now I wait again,, I'm so depressed and desperate for help and relief ... I have been prescribed antidepressants and codeine
I have been diagnosed bipolar and EUPD
I constantly ache legs and back mostly but my fingers and elbows get sore too.. im stiff if i stay still longer then 20 minutes.. have headaches.. migraines... can't sleep and even when I sleep I'm never refreshed I'm constantly tired, and aching.. and my memory is terrible .. I can think of something that needs doing and get up to do it and spend an hour trying to figure out what it was I was doing..
Could these be symptoms do you think?
Medical professionals haven't been involved much apart from initial assessment then refer me elsewhere noone has answers... I had nothing like this till my late 20s my back went and has never really recovered I get numb legs.. restless legs
I'm so tired 😫
I'm sorry rant over 😘
And the restless legs i get had that since I was little like 7 or 8
Come to think of it I was very young also ... my mum used to run my legs under cold water in the bath
As long as I was asleep before I unfrosted it worked 🫣
Hi
I'm sorry to interrupt but I wanted to tell you that I was talking to a friend whose daughter has both. It took a long time to get diagnosed. 2 of her granddaughters have hyper mobility, they knew what to look out for. My friend said her Dr thought she was neglecting her daughter until she was diagnosed. It must have been terrible. Her other 2 daughters are fine. I'm sure my friend has fibromyalgia but as usual takes ages to get diagnosed. I'd had mine a long time before I was diagnosed as did another friend of mine. Pain management did a course which was great because the tutor also suffered pain (not that I wished it on her!)! which meant she understood what pain we were in .
Thinking of you. Pm me if you want to xxxx💜💟
Thank you so much for replying 💕 💗 I refused pain management what is it they do? X
HiYou are very welcome. It depends who you get. I had quite a few consultants who were useless. Just said take more meds!! The course I went on showed us different exercises to do, I'm sure it helped because the lady taking it suffered pain. I do exercises at my pace from you tube. I also have an exercise bike which I can also do at my own pace.
Lots of love Lynne xxxx 💜🫂💟🫂
Hey sounds like a lot of pillar to post how frustrating but can totally relate its sad that more stories like this are popping up.
Yes they are symptoms - the memory thing is called brain fog or fibro fog i get it but over small things.
Hey.. yeah I'm just push off cos they don't know how to treat me... I cries at the specialist and said your telling me its just hypermobility that I have had my whole life with no problems then suddenly its hugely declined (which is extremely rare with Hypermobility as it usually gets better with age) He said sorry pain medication and a physio program might help... 🤬😡😠 might help!!! 😥🥺
The brain fog is infuriating... I have a 15 month old so people are blaming it on baby brain but I've been like it for years and years x
I really hope you get some answers soon
Thank you for replying to my rant... means more then you know 😌
X
Yehr most docs don't like me as I always question them and ask why - what makes you say that - why do I need those tablets - I think its important to not just accept what they say - ive had many crap ones in the past that now keeps me alert.
Congratulations on your baby - similar to you i just commented on someone else's post about uncontrollable shaking that I had after my mum passed - you could put that down to shock or fibro or both given fibro is triggered by emotional stress - your baby brain could be that or fibro or both
I definitely need to start asking more questions.
Thank you she beautiful and keeps me active ❤️
I'm sorry to hear about your mum passing, I've followed you back, we should get to know each other soon x
Anyway it's nearly 3am, I really need to force an hours sleep 😴
Night hun x
Chat another time rest well 🦋
Have you addressed food sensitivities and nutrition? Eliminate gluten & see how you feel. Then introduce back & look for symptoms. Try with dairy next. You could be reacting to gluten or dairy or other foods. Avoid processed foods. Preservatives are the devil. Drink tons of water & ditch soft drinks.
Also, move as much as you can. Walking, stretching, swimming and gentle yoga. Move minute more each day.
Address your sleep hygiene. Go to bed at the same time every night & get up at the same time. Use sleep apps . Meditate daily. Go to counseling weekly.
Try some of those things. Love to you fibro warrior.
Morning to you Sleeyhead, ( which my other halve calls me 
)Ive been diagnosed for about a year now, although they wanted to diagnose me earlier. I too feel i had symptoms since my early twenties, which would of been the 1990's. I dont feel there is much out there in the respect of pain clinic, physio etc, as they dont seem to do much.
The best help I feel I have had is talking on chat forums like this one, as some people talk about what works for them or not and then trying it for yourself. Fibro is so different for everyone, we all have our similarities and differences, what works for one will not for another.
For me eating well and regular, with a gluten free diet and gentle exercises and stretches, definitely makes a difference. Hibernate in winter, as i will have about 3hrs of energy and do a little more in summer, maybe up 5 hrs energy.
Medication can be different for every fibro user, its a trial and error like most things in life.
Although this can sound very bleek, I'm thankful for what I have and its has taken me about a yr to get this far and say apart from my fibro im still very blessed and happy in my life.
Hey there thank you for your message- the energy hours to the seasons is the same for me and has been for years now - it does sound bleek however its a reality 🦋
Yes I guess it dies, but its what we get used to and make the mist of everyday. Be happy 😊
I hope you get too see the specialist very soon for some answers, yes it’s good too chat here with people as we seem too be in this massive club we didn’t ask too join 🙁and we get how frustrating it can be day too day ,sometimes it’s just good too write down how we are feeling and get helpful tips and advice , let us know how you get on xx
Hey there thank you for your msg - I hope to gain a better understanding while I'm waiting to see these hospital people who will assess me- hope your well 🦋
Hi and welcome to our forum, I'm sure you will find answers to any questions you may have on here. We are a friendly lot.
Hey there very kind of you to say 🦋
Hi, has your dr.tested you for a variety of other potential ailments like low vitamins and minerals etc, thyroid levels ( full range TSH, FT4-3) ? I have insulin dependent diabetes( following septic shock and acute pancreatitis), hypothyroidism and fibro ( and now3 years of Long Covid)…and have found that problems with one affects another. 8 or so years ago I could hardly walk with pain and stiffness ( and only amitriptyline for pain) so after lots of research started to largely DIY treatment : to raise ferritin, folate, b12 and vit D levels to maintain them in the higher end of their ranges, raise my FT3 thyroid levels and was able to do 10,000 steps daily ( until covid kept me breathless). My hypothyroids have to resort to private blood testing as dr.s rarely offer to do this range of bloods…I use a Medichecks test, might be worth considering while Gp helps rule out other causes with X-ray/scan etc if you are lucky!
Hey yes they checked for low vitamin d at first definitely wasn't that. I've had no other tests or scans all I've seen is a few GPS and a physio guy whom I only saw once and he was no help.
HiI can empathize with you. I have pain 24/7 as I've got many conditions which cause me pain. I have an hour or less sleep per night due to pain. If. I'm exhausted I sleep a bit longer but then wake up in agony 🤷I'm very lucky to have a great support network of family and friends and of course everyone on here
Thinking of you
Lots of love and hugs Lynne xxxx ❤️🫂❤️🫂
Hi sleepy head, yes, it is a very debilitating problem, to the point I've shed many years due to pain and chronic fatigue. I also felt alone. But when you are seen there are many medications which will help ease it, I recommend a weighted blanket, it helps relaxation and in turn eases the pain. Meditation 🧘♂️ music as well.
Hello! Glad to find you all
Hey
Hello All
hey hey! 
Hey :) 
