Any Advice?

[AchingAllOver82]

Hi guys, first off I would like to say how nice it is to hear so many of my own symptoms being listed here… Obviously I am very sorry you are having to endure this crazy condition, but as the old saying goes, nice to know I’m not alone 😀

So I am new to this, well to the diagnosis, not to the never ending list of ridiculous problems and intolerable pain that comes with trying to adult even at a basic level! I have experienced pain in what seems like every part of my body for about 3 years now, as well as horrendous brain fog, the night bladder issues, constantly being cold and then too hot, restless legs & arms that occasionally also feel the need to just start flinging out on their own accord - sometimes it feels like I’m being possessed by Michael Flatley and he’s trying to break out 😂Not to mention the other million things just seem to constantly be going wrong or hurting. 

I’m sure you all feel the same but sometimes  I don’t understand how I can be in this much pain and not actually be dying! You know like when you bang your knee or whatever and there is so much pain you can’t believe there is no blood! 

Anyway I’m after ANY tips:hints to help me try and make life a bit more bearable, my main issues are pain management (unfortunately it’s postcode lottery for me and I fall outside of catchment for fibro and pain clinics) sleeping and probably worst of all my brain just does not work at all, to the extent I’ve worked the same IT job for nearly 15 years and I just can’t do it anymore, it’s like things I know I know just aren’t there is nothing no light bulb moments just brain silence- I forget almost everything instantly, I loose words and really struggle to hold my own in social scenarios, which is a hard one for me as I was always a talk to anyone about anything kind of girl…

I will stop rambling on now, can’t even remember what I was saying at the begging of this post- can you??! 😂

Take care of yourselves x 

[fmlife]

am so sorry your suffering with the dreaded fibro, welcome.👋.

my only advice is simple stay warm, stay safe. save energy where can keep flexible.

pace rest and try, repeat, pace rest,

be kind to self,

spoons theory may help

plan only one basic task a day, anything else achieved is a bonus. 🍀

celebrate all achievements no matter how small.

write a fibro diary,.

hope have a less pain day tomorrow or later today as past 00.00am.

if struggling with work can be assessed for reasonable adjustments

[AchingAllOver82 in reply to fmlife]

Thank you! I have not heard of spoons therapy I will have a look at that. ☺️

[Dizzytwo]

Hello, welcome to our group. We have almost 65k posts mostly relating to questions based on all the typical fibro related questions.

So if your looking for a pacif query may I point you to our search box.

I would encourage all new members to read through some of the posts. Even those going back many years. I personaly still find those older posts very helpful and ive had fibro for about 40yrs. Like the saying goes were never too old to learn lol.

You may not be aware but you can lock your post to this community only if wish to do so.

If you wish to lock your post this link will show you how 😊

healthunlocked.com/fibromya...

Best wishes

Momo

[AchingAllOver82 in reply to Dizzytwo]

Thank you. I have been reading the old posts actually have a page of notes of things to try. Thanks for the link ☺️

[Dizzytwo in reply to AchingAllOver82]

Your welcome 😊 If you need any help navigating the forum please let me or any of the admin team know. And we will try our best to help.

[Loobielu]

Hi, welcome. Loved your post and your name. I still wonder most days, how can I ache everywhere, how is that even possible 🤦. I'm also newly diagnosed but have also been dragging around my symptoms for years and boy it can make you feel lonely. Re tips, it's like pinning down a moving target and unfortunately one solution doesn't fit all 😏. Heat is my 'friend' and routine. I try and stay active but I also rest lots too but I resist sleep all day which helps sleeping at night. This is a great forum, both for help and advice and compassion and empathy. Best of luck with your fibro journey and be kind to yourself as we can be ridiculously hard on ourselves X

[AchingAllOver82 in reply to Loobielu]

Thanks

Heat is good for me too, I even asked my doc about the chances of getting a hot tub on prescription! You can imagine how that went down….

Rest is my big issue I think! I feel like I always have so much to do, what with work, my children & grandchildren and the fact my house always seems to look like I’ve been burgled 🫣TBF we are currently in the proses of getting some work done in the house and throwing some or LOTS of things out in a bid to try and make life much easier once it’s done! 👏🏻👏🏻

[Blearyeyed in reply to AchingAllOver82]

Although you won't get a hot tub on prescription, although I'd be in heaven if you could , it would be worth checking the availability of Hydrotherapy in your area.Check how close your nearest hospital with a Hydrotherapy suite in its Physiotherapy Department is , you can often do this by checking with a Google search or on the hospital websites.

Ring or see the GP and tell them you want to be referred to your physiotherapy department at ( name the hospital) to help improve your mobility and Fibro pain. Most GPs have no idea that the hospital has these let alone the fact that they can refer you to them.

You get an assessment from a Rheumatology Physiotherapist then you get an initial set of sessions for 10-12 weeks. If you are showing progress but still aren't confident with land exercise , and find it has reduced the pain you ask your physio to keep signing you for repeat sessions.

It made a big difference to my overall pain , energy and the neuro symptoms by doing this.

[AchingAllOver82 in reply to Blearyeyed]

Thanks, I absolutely will look into this makes perfect sense to start exercise in water! ☺️

[Sparklingsunshine in reply to AchingAllOver82]

Exercise is good for fibro, obviously not what we want to hear when we're sore, aching and knackered but it really helps. Last year I got an exercise referral from my GP to my local council run leisure centre. Its an NHS 12 week programme where you have an induction with a personal trainer and they devise a routine based on your limitations. Obviously you need to start gently and pace yourself.

Mine was discounted by about 8 quid a month and once the 12 weeks were up I continued going at the discounted price. A lot of gyms have saunas, steam rooms, Turkish baths which can be very soothing after a workout.

My gym also offers discounted memberships for the over 55's. If a gym isnt your thing there's yoga, pilates classes , both very good for strength and flexibility. Also swimming is very good for Fibro or Aqua Aerobics which is an instructor led aerobics class in the pool. Much gentler on the joints. Many lesiure centres include these classes in the membership.

[AchingAllOver82 in reply to Sparklingsunshine]

thank you - I will ask my GO about this

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

[Hidden]

Hi AchingAllOver82

I'm so sorry you are suffering like you are.

Have you had investigative tests on your hormones, thyroid, vitamins and minerals? Deficiencies can exacerbate or be the cause of pain. I know years ago when a dr put me on compounded progesterone (sp?), that helped my pain quite a bit.

A hot bath with Epsom Salts is good. Even better is a hydrotherapy pool around 32degC which is warm enough to stop shivering but cold enough to reduce pain for 24hrs. In the past when I was too weak to even walk-exercise in my local public pool, I simply immersed myself in the water up to my neck for 30minutes and that helped for that day and the next.

A spa bath with jets can be heavenly. I agree that it should be on prescription!

Regarding your legs and arms flinging out at night time: my late father had night terrors in his 60s (used to lash out and hit mum, sometimes), years before he was officially diagnosed with Parkinsons and that was a symptom -I don't wish that on you but may it be a factor to consider if you've checked out every other avenue.

Chelated magnesium can be a great help with sleeping, muscle pain/twitches but make sure you check with your dr first before taking it, or anything else.

Some days after I've been up for awhile and warmed up but things are just not working enough to function even at a low level -I call it a "Lost Day". By accepting I won't be able to do anything that day, I stop beating myself up mentally, wrap myself up warmly and watch my recorded TV programs -especially humour.

If you do manage to do one job a day (even if it is the washing-up) keep reminding yourself that you have done something and that will help your peace of mind somewhat.

One of the best things I've found in recent times is -this, being here.

Lots of good tips on here from experienced people, and links to relevant information.

I wish you some easing of your pain, AchingAllOver82.

[AchingAllOver82 in reply to Hidden]

thank you 😊 some good advice there too!

I have considered Parkinson’s before but as I have seen users post before, how do you know the difference between a fibro issue and a different one!? I will monitor and maybe make a diary that the docs love oh so much and go back and see what they say.

I will look into the magnesium too.

Thanks

[giraffe8]

Sorry you are suffering so much too. I find the only thing to have helped me is a gentle swim in has to be warm water daily or as near daily as possible I force my self to do it but if I don't the aches and pains every where get worse. Fibromyalgia and all the related conditions are very challenging to live with but you are right sad as it is , it is a comfort to know we are not alone and some others can understand. I feel ''normals '' think I am exaggerating or making every thing up.

[AchingAllOver82 in reply to giraffe8]

Normals 😂😂 that really made me laugh

Yes I try and spend as much time in warm water as possible, it’s like we need a suit we can get in that is just filled with hot water and we can then just go about our watery day!

[Hidden in reply to giraffe8]

Totally agree with you, giraffe8.

Swimming, walking or standing in warm water (local heated public pool) is my only pain killer; it's the only thing that works for me without adverse side effects.

[Lucycourt]

So sorry to read of your bad time - l too have a bad time -so much pain - just feel that at now I am over 80 -medics have no time or interest - and I suppose that is fair enough with NHS problems .I feel I am a burden t o all , I thought swimming might help alas the very short walk to the lovely pool in a hotel near me has me beaten .I now feel guilty writing this when you are all so brave .!!

[AchingAllOver82 in reply to Lucycourt]

Bless your heart!

Do not feel guilty at all… I feel bad we live in a world where we cannot even provide good care for the older generation, without whom let’s face it none of us would be here!

I’m also very sorry you are in so much pain and don’t seem to be getting any help, it truly is disgusting.

I’m sorry I don’t know what advice to give for somebody in your position, maybe someone else here may know of any services that could help..?

Take care

[giraffe8 in reply to Lucycourt]

I am so sorry you are in pain I think it becomes more difficult to deal with the older we get. I do not know where you live but lots of places in Uk have a Dial a ride or some kind of organisation that have voluntary drivers to pick up people and take them short journeys and even wait to do the return journey again. Something like this may help you be able to make use of the hotel pool. Try your local town call for advice , Age Uk, Salvation Army etc. Perhaps you may be entitled to attendance allowance and then could be accompanied to the pool and driven there or could your GP arrange for you to go to hydro therapy where a transport service may be in place. I hope you find a way as warm water certainly seems to help with aches and pains.

[giraffe8]

Forgot to mention hot water bottles I have two on the go most of the time , especially on the stomach for the excruciating IBS and the annoying irritable bladder that often likes to play up even more at night. The list is endless. Sometimes I find listening to soothing waves or gentle rain on You tube to aid sleep Have to be careful there are no claps of thunder or other loud unexpected sounds in them first. I hope you will find some thing to help from everyone s recommendations.