Morning pain, stiffness and recovery time

[Surviver 45]

Hey Jamie
Morning stiffness is the hardest thing for me too.
Even whilst sleeping when I try to turn I can moan out loud with the pain of stiffness.
Sometimes I need to turn every half an hour or the pain and stiffness gets unbearable.
I have an electric blanket that helps me greatly, but I can't always have that on thanks to the peri menopause sweats! And that's in the freezing UK weather!

Some morning's I will need my walking stick that I keep by my bed just to walk around to the kitchen to get water and tablets etc. I feel like a 100 year old lol
Im like the Tin man out of the Wizard of Oz that needs a good oiling to function and get going lol I then start up by gentle housework until I feel some sort of normal mobility come back.

You are so right about movement. You have to push through or you will end up like that broken lawnmower at the back of the shed!
It's really hard, but if you sit or lie about too much it makes it even worse.

I find if I'm happy and mentally in a good place it's easier to deal with?...
If I'm having a down day it's worse.
I guess that is why they say stress and depression can make the pain worse...
I always try to remind myself that there are people out there far worse than me. That would give anything just to feel pain.
Just so they know that they are 'alive'
Being humble helps me accept what I can't change. And being grateful for what I do have.
So, don't be hard on yourself, love and learn to accept the Serenity Prayer ️

You always have the Fibro community to help share your pain's and strains, and hopefully lift your spirits in times of need
Happy Easter!!
Don't over do the Easter eggs️

 

[SBee]

Yeah I get the working with both perimenopause @Surviver 45 and fibromyalgia is great fun isn't it?!
Everything happened all at once so my body just couldn't cope with it all.

I had no option but too sort the hormonal side out first as it was too severe. I thought all the pains and fibro symptoms were down to peri, but now I have ( thankfully) got the hrt sorted out and am more stable , I can see what I've been left with with the fibro.

For me I need to sort one ' big ' thing at once as multi tasking sets off the anxiety. So, meno at best I can, now working on the fibro ( always ongoing) and next is seeing about arthritis. Fun isn't it haha.

Definitely the emotion\mental side has a bearing on the physical and vice versa. All I think is we do the best we can on any given day.

 

[barbara lowcock]

I never write on this site but your situation is so like mine. I am never without pain day or night, i am up most nights for 3 - 4 hours and if i get 4 hours sleep it's a miracle. i do think lack of sleep afects everything but how to get it thats the problem.
Good luck everybody we are in this together.

 

[Radmun]

Badger, so very true…. Keep moving even though we know it will bring on so much pain. The adjustments we all had to make to the way we live now vs our old lives. Some times I just laugh and shake my head at all of this craziness.

 

[JamieMarc]

@Badger
LOL. That's a good way of putting it badger. We're not morning people. At least not the majority of us I think.
I think it's sad and even shameful that more research and more assistance is not available for fibromyalgia sufferers. I was talking with a copay assistance organization the other day about getting assistance with my fibromyalgia medical expenses. They already assist me with another condition that I have. Their mission statement says that they help people with chronic and debilitating conditions, yet I was told that fibromyalgia is not one of them.
When I heard that I felt a little angry and sad inside. Not because I wouldn't get the help but because it's not recognized as much as it should be.

 

[SBee]

Seems to be contradicting evidence in the UK as to whether fibromyalgia is classed as a disability.
A petition went through parliament regarding this issue, and I have spent a few weeks ploughing my way through it. Legal speak is hard at the best of times and politicians do love to avoid answering relevant questions.... My brain fog will only cope with small chunks at a time.

Hope you win this fight @JamieMarc

@Radmun but the nail on the head. Gotta laugh sometimes at just how bizarre our lives can be. Thanks for reminding me.

Incidentally I would be interested to know of anyone in the UK who knows for definite if fibromyalgia is classified in UK law? Or indeed a 100% specific classification in the NHS? Too many sites seem to be unwilling to commit. Ta.

 

[Surviver 45]

Hi @SBee
I dont know if this is what you were after? I will try and attach the file here from the DWP and how they class Fibromyalgia as a disability in the UK. Hope you are feeling well

 

[SBee]

Thanks @Surviver 45 this seems to be the paperwork synopsis prior to the parliaments debate. So this info is going to be a lot easier for me to go through rather than the official stuff. I would recommend that as a cure for insomnia

Will read through your info later when my brain wakes up ( sort of)

Appreciate it, thanks. And I wish you the best day you can have

 

[SBee]

Interesting read. Yes I ploughed through it. The upshot seems to be that Fibromyalgia in the UK is classed as a Long Term Condition (incurable ) But by my understanding not as a disability.

This debate was in 2019 so if anyone knows anything since this I would be interested to know.

 

[Badger]

if anyone knows anything since this I would be interested to know

I've wondered this myself as it has felt like the health professionals discretion in the past which isn't always helpful.

 

[SBee]

Hiya @Badger not very sympathetic to the realities of day to day living with fibromyalgia are they?
I'm just reading through some older threads ( you're on some) regarding PIP. Whilst I don't think I'm that bad yet I am concerned about the future of my health of the OA I already have is joined by rheumatoid arthritis. It's already quite debilitating. If I have any questions I may well be restarting a current thread on this.

Hope today's an ok one for you Badger

 

[Surviver 45]

Hmm for the past 6 years I have been entitled to disabled/carer's benefits such as a Freedom pass for transport, ( London) free carer's entry on various days trips out, I've also been in receipt of PIP for my Fibromyalgia. High rate for daily care needs and low rate for Mobility.
But I know this is based on how your condition affects you rather than the condition/ disability itself.

Most medical practitioner's that I have have dealt with consider my condition to be a disability.
Simply because they can see how debilitating it is for me.
Maybe I have just been lucky? I do read a lot about medical persons being dismissive of the condition all together.

Hugs to you

 

[SBee]

Well @Surviver 45 I think a travelcard would be bought the question here, we only get about 2 buses a day... But I think your post will be of great interest to many in the UK,whether now of in the future.
I'm very much about is how the symptoms affect an individual on a daily basis.

I am beginning g to get some gp back up from a positive written diagnosis, and hope that my rheumatologist appt helps further, especially 're any new arthritis.
I feel fortunate I was previously referred to a chronic pain\ME clinic as the gp was focused on medication of needed but was very informative 're lifestyle\diet too.
Thanks for this

 

[Surviver 45]

You're welcome @SBee

I really do hope you get the best care and back up of the GP and clinicians.
It helps you so much from a mental health perspective when somebody can empathise with you and be understanding.
Especially from the medical world.

I have dipped in and out of pain clinics in hospitals over the past 13 years for my Fibromyalgia.
They tended to focus more on medication.
But just yesterday I had an appointment online with a physiotherapist (NHS) and she has referred me to 'Hydrotherapy '
This is new for me, its specific exercises in very warm water with a physiotherapist.
I'm hoping this may help me with the back spasms I keep getting in my lower back when I'm feeling anxious The lady also said that they do 'meet up' groups on a Monday so all people that go there with any chronic pain illnesses can have a support network and be with people that
"Just get it"
Furthermore the 'Mindfulness' groups and gentle exercise groups sounded appealing.
Overall I was very impressed with the amount of support shown.

She said they are part of a multi- disciplinary team that work alongside pain doctors and psychology doctors to give a more holistic approach.
Which I am all for.I am looking forward to re- entering the pain management clinic as it sounds like they are well prepared and understanding of the condition.
Much more I think than 13 years ago.

At the moment in the UK I feel very supported with my Fibromyalgia and the amazing NHS. I'm truly grateful.
As I know many others in the world can not access this treatment due to financial hardship.
I dont know what i would do without the NHS!??
as i am dependent on insulin too.
They literally are my lifesavers
I hope Fibromyalgia continues to get the recognition it so rightly deserves, here and around the world

Love and hugs

 

[SBee]

Blimey @Surviver 45 I couldn't agree more with the holistic approach for myself, and am sure many on here find themselves using this approach in varying degrees. I think it's very much trial and error to see what works for us as individuals, which can be frustrating as it's human nature to want a quick fix. Fibro and many other conditions just don't work that way.

I first went into the more holistic approach some 30 years ago when I had chronic fatigue syndrome and was very let down by drs at that time. ( not believed which unfortunately many of us know too well). But, to be fair, it was a bit unknown at that point. So I was literally left to my own devices for over 4 years. Eventually I went to a herbalist to get some treatment. I was already a strict vegetarian so diet was already safely in place and with that a better approach to caring for myself. With that life, an interest in the more holistic side is often lived by those with these strong beliefs.

Sounds like you have had some amazing backup and support from the medical staff ( I too remain intensely grateful to the NHS, particularly over the last few years). I was gutted to have to stop yoga, it benefits me greatly as a whole person, but I cannot use my hands of wrists much, but have found online yoga which adapts to many conditions. Hydrotherapy has been recommended to me. The pool in our nearest town is unheated. Hmmm. That's a no from me.

The meditation I have begun after joint this forum, work in progress, but my breathing has improved tenfold. That will help with the anxiety I still am.working with ( hormones have brought me to my knees and affected my mental health), and the chronic fatigue is a pig. But weirdly, I can say I am in a pretty good place. Full of pain, but I still learning how to work with my healthy rather than against it. And I know where to turn to if my mental health takes a dive. Atm, I seem stable hormonally, and therefore mentally, which is amazing seeing as what life has thrown at me in the last year on many levels.

Like many, I dont know anyone in ' real life ' who has this, any other concurrent debilitating health problems , for me, they are life altering. Hence the advice and supporters being so valuable. think you meeting up with others in a similar position will be a huge help and further support.

Gentle and slow seems to be the only productive way to work with this.

I so hope that things help you to work with your physical and mental\emotional health . I am sure we can all only do the best we can on any given day. Some days just don't seem to want to work for us and we all deal with those days differently.

Take care