Chronic Pain- Daily chat drop in thread #2 All welcome

[Akire]

Hi all well we filled up the last one and now we have our newish chronic pain boards.

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living through it. All welcome jump in and feel supported

Sorry missed your last question!! So I have read that magnesium is better absorbed by the skin than the stomach. I rub down my legs and feet with this every night when I get into bed. It's from Amazon.

Well done getting through the day. Thanks for recommendation.

still too wiped out to do much, got to build my medications back up to the dose im meant to be on so wont feel my usual level of 'normal' for a few weeks yet. Have got new cream for my skin because its gone really weird and papery and the diprobase i usually get prescribed isnt touching it so the gp has sent me soemthing differetn for it and has said to wash with it as well. also sent me suppositories as ive been having some issues in that department, he said use them for ten days and if no better book into see a female gp. thankfully we have more than one female gp at the practice so it shouldnt be an issue seeing one of them if i need to.

hoping everyone sleeps tonight!

Hi.. Newbie here. (waves)

Have already have multiple health problems. But for 2/3 years been worsening drastically, have just been told that I have quite advanced Fibro and maybe also MS(await neuro) . That I probably will not be able to return to work.

How do people cope with knowing this? , and also how do people cope with the benefits system? And the way family and friends treat you when you say that you can no longer work? like you are unwilling and lazy, 'surely there's something you can do etc'.

I have filled the forms 4 months ago for dla, and heard nothing back. I think maybe work will retire me, but I have been told not to do this and to go on benefits instead by the CAB. What have other people done? I'm 40/single.

Knowing there's no treatment etc is bad, the meds they give are things I've already tried for chronic pain. The only thing I've been offered is physio and give up your job and live with it.

Thank you

Hi @Daimyum and welcome to the club that no one really wants to be in!! It sounds like you have had a really rough time 💐

I'm still working from home (although have applied to PIP to hopefully get some help with the inevitable expenses of having a disability) so I'm sorry I don't really know much about your questions. However I'm sure someone more knowledgable will be along shortly!!

Had a really bad night again with increased pain levels, I think I saw every hour 😢 just had some codeine and cbd to hopefully get me through today. I have a lot of work to get through so I could really do with this bloody pain lessening a bit!

Hi @Daimyum welcome aboard. Plenty on here still manage work with a lot of struggle. I have lived on benefits many years now with disabilities similar to MS I live in my own so least get basic level.

Can’t say it’s easy or fun. Certainly for ESA and PIP assessments many don’t get first time and must appeal. But appeal win rate is something like 80%. Do you have job that would retire you with big pay out? Makes no difference if you are medically retired from work as in DWP can still find you fit for work after. But could affect benefits if you get lump sum. I’d defo make sure you have savings that can tide you over.

I was signed off work for 3m (never went back) but as I needed apply for housing benefit they took into account my last 3 payslips. So 2 full pay and 1 was £70 per week sick pay. They didn’t listen that going forward I was on £70 week for next 2m and couldn’t pay my rent. They gave me something silly based on the average. Once I had been on no money for 3m I had go back and then paid full. But obviously you start getting into debt. If you have enough of cushion pay rent and basics for 3m it will mean you are much better position.

It’s very much grin and bear it and do what you have to do. It’s fun for no one. Obviously that’s why it’s there to support people who other would be homeless and starve but sadly lots of people make comments and you and your level of entitlement . I once had social worker walk in and first thing she said was “that’s a big TV” honestly it was the smallest TV you could buy at the time you can get about 3 a4 pages across it. But it put me in my place in her opinion I shouldn’t have anything and she would judge me if I did. I stop with horror stories but they are necessary evil just have crack on. I do get enough live on but then you add council care costs on top you are left with Hardly anything. But again various from area to area. Social care is not free even if have no savings because take benefits as income. I have pay first £6500 a year!

Sorry about bad night @cricketmum84 you must feel rough.

I’ve got flu jab in 58min! Must get cracking it’s only down road. Then meeting freeing coffee my social highlight of the week.

hi @Daimyum.

Slightly better on pain front today and managed some sleep.
Hope everyone has a decent weekend!

Well thats my kids off school. All of them have raging temps, coughs and sore throats. LFT was negative for DS1 so not covid, but they're really unwell.
I'm in a fair bit of pain today, I just wish it would go away and I could have just 1 day completely pain free

Hi Akire..
I will maybe be retired off. Paid 20yrs into nhs pension, but low income as had to cut my hours due to health. So not on a good wage and no savings. No idea what I will get.

Am on UC already, and have done the 'dla'? forms in April. I thought when work stop paying me, that will take over.

The CAB said back in April that I would get benefits, and not pension maybe as too young to cash it in.

From what you said, I think I need to speak to someone in the job centre, get some advice.

Also do Pip forms (again after being refused)

I wish it wasnt happening to me, am now in eye casulaty as what I thought was migranes worsening is something more serious, needing surgery today and probable MS optic neuritis.

Hi Gillead and cricketmum

Thanks for welcoming me to the group

That’s rough but lateral flows don’t always show up with symptoms you are supposed use PCR test. I know they can flag up if do have symptoms but any symptoms you are supposed get proper test done. Sorry!

Darn it... off to order PCR tests...

The PIP is the new DLA only kids get DLA. If you are on UC they may have applied for ESA which is sickness benefit either in support group or work related which mean that once sick note runs out you be nagged to look for work and be allowed to not do anything (support) or attend job centre and go through motions (work group)

Sorry about eye problems they really are nasty. But good news is that often that can give you a diagnosis and then access to drugs and support rather than waiting 6-12m just to see a neurologist.

It explains better here

www.nhs.uk/conditions/coronavirus-covid-19/testing/get-tested-for-coronavirus/

Hi @Daimyum hope you get seen quickly and they can help.

I went out to a concert last night and am absolutely wiped out, I am glad I went but it is hard to think it takes so much out of you. I realised that the sensory stuff with noise and light is probably a lot of it, I think I have been in denial about that as it was not something I wanted to accept and until my diagnosis and discussing that with the consultant I had ignored it.

DH and I love live music, so we are trying to think about ear defender type things to lower the volume and maybe dark glasses to reduce the light level.

Lots people have those at concerts no one will bat an eye. Though can understand feeling self conscious about it at first. I wear mine all time at home!

@Akire thank you, I hope nobody will notice too much, good idea to use at home when needed too.

PCR tests ordered.

I'm exhausted, got a migraine coming on too so that's great

I use noise cancelling Bluetooth for radio and TV helps get rid background noise from road and noisy flat and construction site. They are life saver.

Had semi ok day today not pain free of course but not had any I can’t do this any more moments. So feels like a mini holiday.

I was feeling so bad yesterday. My legs were hurting so badly with nerve pain and my ankles so swollen they hurt to move at all. I had been doing stuff all day, mainly out in my powerchair but also around my house on crutches.

I just went to bed and turned on my bedroom fan, I can't feel air temp so rarely bother with the air conditioning option.

Today I am flooding and cramping, aren't periods fun . Having so much trouble with tampons, as my hands can't move properly. So I gave up and resorted to incontinence pads, which I generally keep for outside the house due to cost.

Plus my legs are still painful and swollen today. But better enough to clean kitchen from a perching chair and my dining table from a dining chair. Then back to bed. Proper shower! First in several days and back to bed and now downstairs to eat my first/last meal of the day. Enjoying the kids and husband's company.

Sorry just to drop in and offload, just really hoping tomorrow will be better. I am due a good day I think.

Sympathies periods were the work of the devil! I use tena pants sometimes too just so need to get up and move less to change. They also stop wake and the following mess. Sounds like you have still managed loads today so well done. Hope evening goes well

I did manage a lot. However I will pay for it tomorrow, but you know how that goes.

Done worry @Worrysaboutalot my lovely. I often pop in just to have a moan about how bad the nerve pain is! I am with you X a million right now as the nerve pain in my hands and legs is relentless! I can't even open a tube of lip balm!

Re periods are you able to take the mini pill at all? I had horrendous heavy painful periods then my GP switched me to Cerazette and it's been absolute bliss. I haven't had a period in about 6 years x

Funny my Gp put me on that also but only 2/10 women have their periods stop. 4/10 normal 4/10 irregular comings and going’s. She sold it be me as magic fix I was most cross when I googled it!

@HerRoyalRisesAgain how did you get on with PCR tests? Family had them few weeks ago taking 2-3 days to come back. Hope kids and you managed get some sleep last night.