Me again

[TheOwl89]

hi everyone I've been quiet the past couple of days as I have been in absolute agony as I write this post I'm in excruciating pain I've spoke to physio, Orthopedic and GP and all 3 have all different ideas and none can agree on next steps. I'm starting to lose faith in the health care professionals as I have a shortening on my spine and no natural curve in my spine it's completely straight and in my knees and hands I have fluid and OA. Gp referred me to orthopedics to get to the bottom of my spine and knee issues who advises I need stronger pain relief and physio, so referred me to physio, I went to physio appt and they say there is nothing they can do for me and I need stronger pain relief. Both orthopedic and physiotherapist have written to my gp askingfor stronger pain relief so my gp as increased my duloxetine to 120mg which isn't helping as I do t believe it's the fibro causing my pain I believe its the shortening on my spine and the OA in my joints but this is all the gp is willing g to do since rheumatology diagnosed fibro I don't know what else to do I've been unable to move for 3 days due to the pain in my spine I've tried hot and cold treatments, gels,codiene, diet changes, physio nothing is helping i dont know where totry or go next. I'm supposed to he carer to my partner, step son,mother in law,uncle, father and mother and yet I've not been able to move for 3 days

[fmlife]

Gentle hugs

firstly ring social services to get emergency help for others, while laid up if rely on you.

3 days without your guidance may lead to mischief.

due to the medical folks not able to decide a plan of action would discuss with gp and ask for second opinion.

are you sure should be at home, if in so much pain surely hospital is where should be for stronger meds. scans ect. perhaps ring 111

is someone managing to supply yourself with drinks, and food?

how are you getting to loo?

would borrowing a rollator help aid movement to bathroom, if not a wheelchair user.

a higher seat for loo or stand to help get back up may help you, they are easier.

some commodes have a ring to stop the gap if need seat higher

( the red cross do borrows on short term basis of certain items check website.)

bed blocks again to make easier to get up and down if standing,

seat blocks.

helping hand may also help for undergarments pulling up and picking up dropped items,

on the online places, and pre owned online places, there are lots of options in the mobility sections.

I use a electric heat mat could you manage one, if can use a kettle a hot water bottle staying warm may help

steriod inject may reduce swellings inflammation. rhummys did an injection straight in costos for that reason with me.

hope the pain dulls soon,

[jackiesj in reply to fmlife]

Very good advice...

[TheOwl89 in reply to fmlife]

thank you for the very detailed and informative reply, yes I had help with drinks and food and help to manage the loo, I've been advised not to use any aids as may cause further issues as I was using crutches and mobilty scooter and the orthopedic said it may make things worse and not to use anything at all its so hard I've since spoken gp again and they are looking at amitriptaline and gabapentin got a face to face appointment on Monday morning so hopefully I will get some more

[Arymretep]

sorry to hear that, what painkillers are you on, duloxotine isn’t really for your sort of pain it’s more for general fibromyalgia being an antidepressant, why won’t your Dr give you stronger painkillers, Sounds like a steroid injection would help you, can you maybe see another Doctor in the practice.

I’d ring 111 if your Dr doesn’t help you , and say what pain you are in, good luck

[TheOwl89 in reply to Arymretep]

literally I take

120mg duloxetine

2x paracetamol 4 times a day

and then my other meds for my other conditions I have.

Got an appointment Monday for face to face appointment to see if amitriptaline or gabapentine will help but I think they going too much down fibromyalgia than the actual issues I have with the spine and knee etc

[1whitestar]

hI when I have a flare up I'm bed bound for days and the pain to is horrendous. I now have tramdol to take but for the pain only. I do feel for you . Hope your

[TheOwl89 in reply to 1whitestar]

i wish they would give me something they have even stopped my codiene

[1whitestar in reply to TheOwl89]

i hope your ok. I have bean in in pain all over today and my tummy and a sick feeling also so tired from this fibromyalgia. Hopefully tomorrow be better day. 😌

[TheOwl89 in reply to 1whitestar]

funnily enough no pain today, just my knee giving way with the OA but defiently have felt very light headed and nauseous and everytime I have stood up I feel as though I'm going to collapse which is new for me and I don't understand why it's happening to me so today as been a day of getting the washing done and a few bits I've needed to do to take my mind off the nausea but I will be asleep soon hope you feel better tomorrow

[Gaballetto]

Would massage help, do you think? I know more money out, though because it's not available on the NHS

[Aoibheann in reply to Gaballetto]

Massage is available NHS in the north of Ireland. I get it at my physio appointments

[Gaballetto in reply to Aoibheann]

I'll have to look into it here in Dorset, though I've just completed a series of NHS physio appointments (3 or 4 of them) in which the physio just talked, and didn't provide any immediate physical treatment to attempt to alleviate my symptoms, and never mentioned massage therapy.

Physio treatments in Australia, where I lived till 2018, always aimed at immediate relief of the pain with massage, ultrasound, heat and electrotherapy, with some advice for self management at home thrown in, so I was very disappointed with my recent NHS physio 'treatment'

[Aoibheann in reply to Gaballetto]

I asked the NHS physio for a massage. She was a bit taken aback initially, but I got my massage anyway. I also went privately to a physio for massage which cost £35 and there was a difference of day and night!

You must go back to your GP for stronger pain relief. The treatment you received in Australia was amazing. I can feel your pain. XX ☘️

My brother lives in Brisbane and teaches in Villanova.

[TheOwl89 in reply to Gaballetto]

my physio discharged me as I'm quite active and mobile on good days that they said there is nothing they can do to help me as im doing everything they will tell me to do orthopedics rereferring to get second opinion as she thinks I need help with the hypermobility side of

[TheOwl89 in reply to Gaballetto]

the slightest touch on my spine Is horrendous due to the shortening on my spine, I even get pins and needles in my legs and they said if continuesw may need surgery as could be on spinal cord but this is all the say and never act or give anything stronger for the pin

[CheetieCat]

I think you really need to speak to your GP again. If your pain is OA it's not being managed, at all. This is from NHS on OA

nhs.uk/conditions/osteoarth...

If your GP still won't prescribe anything more than duloxetine then I would suggest either a different GP or contact out of hours - not exactly what the service is for but you're being left without much choice with unmanageable pain.

Hope you get some relief soon

[TheOwl89 in reply to CheetieCat]

thank you, I did read this information the other day and tried telling my gp on the phone but she was not having any of it

[Aoibheann]

Hi, I’m on the waiting list for back surgery. Meanwhile I have had 2 epidurals which do help. I take Longtec, Pregablin, and anti inflammatories. Over here in the north of Ireland the hospitals, GP and pharmacist all advise to take paracetamol with my prescription drugs. So I take 2 paracetamol with my Longtec and 2 with my anti inflammatories.

I know what you’re suffering, it’s just awful. Take care.

[TheOwl89 in reply to Aoibheann]

thank you, I really do think they need to either give stronger pain relief or instead of saying they monitoring the pins and needles in my legs actually see if it's touching the spinal cord since having my operation in April my organs will have been moved etc to get to my ovaries and the scans was done before my surgery and since surgery on my ovary is when I've been worse

[jackiesj]

I was first diagnosed fibro and its been MS. so many years now.I am in US and we have pain medicine doctors, im not sure there if you all have that kind of clinics. you have to be reffered and it takes a very educated doctor to proceed...i have on certain days etc weeks even of the pain. control is essential and at least 7 hours of sleep for me a must. pain wakes me up. a natural path, natural pain medication...i love the comments here.best wishes.

[TheOwl89 in reply to jackiesj]

ive asked to be referred to pain clinic but nothing ever happens.

[Cotswolds25121 in reply to TheOwl89]

hi, I had the same experience

[Yassytina FMA UK Volunteer]

Hello , I am really feeling for you being in so much pain and you need support and not have so many people too worry about , being a career and having a step son is enough and i do hope that social services can step in for the others as this is way too much on you. I would say too your GP that you need too explore a different route for pain as duloxtene is not working for you personally, I would let doc know (you proberly already done this) that there are people reliant on you and see what he can do in way of phone calls or letters getting you more support , I hope something gets sorted very soon xxx

[TheOwl89 in reply to Yassytina]

im currently in talks with social services to get help for my uncle but my partner is very good with me as he needs more mental health care so physically he been helping. Which is a big help at the moment. I have a face to face appt on Monday so fingers crossed

[Terber]

I was put to a physiotherapist and after about 4 year ago. After a block of 4 visits of gentle exercises I was given a walking stick and told they can't really help me . As you all know it is very difficult to exercise while having fibro. Physio couldn't help me. The pain is too bad.

[TheOwl89 in reply to Terber]

i understand what you are saying the exercises they would normally give for fibro they said is difficultfor me as I have hyper mobility too and the OA and shortening and straight spine so they said there is nothing for me either

[KTRANSC]

Physiotherapy is not recommended for fibomyalgia except hydrotherapy ie warm water 37.5 degree salt water bassin

Kirsten(KTRANSC7)