Fibromyalgia Action UK

How much can one take

Been in hospital now for 11 days and counting I broke down this morning I’ve had so many consultants people through the door & still in terrible pain unable to walk upright I push myself with the frame 2/3 times a day out of my room so my legs don’t seize up I want to vomit when I get back to the bed I can’t get in the shower & I don’t want the nurse to wash me I find it humiliating so I wait until I got more strength later I miss my home my bed my electric blanket my husband will not let me leave hospital in a wheelchair as I was so desperate to get out 2 weeks ago I did just do o could get home & ended back on two days later you cannot sleep in hospital 3/4 hr trying to push through pain with exhaustion dosent work rheumatologist said my stomach back muscles not supporting me my hips knees feel like a 90 year old

I’ve got nothing left to push with you get to the point your done talking

Very down

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ask the hospital if they have a hydro pool hun and insist on going in, otherwise where are the physios?

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Hi there

Hydro pool not for inpatients and this Is private side of hospital

Nurses gave me a frame at week end as going insane in this room physio was all of 18 clueless said posture better off walking without it I can do 10 steps without or 40 with frame spasms in back I’m finding it hard to eat as the endoscopy showed gastris only comfy position is flat yet another pain team coming every drug oxicodine oramorth far to strong making me vomit as on dihydrocodeine at home maybe this is the flare up from hell never in 4 years have I experienced anything like it

Hope your cosy x

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ask about registering for using the pool privately then, I pay at my hospital its a fiver a session and well worth it. As for drug treatment, have you got a rheumatologist onboard? Can you be referred to pain clinic? are you on omeprazole or something like that for your stomach? I have only had 2 major flares in 17 years and was given a muscle injection of a steroid called Kenalog-ask to see your rheumo doc if they refuse then ask for a complaint form, sitting around will not sort you out and is a waste of a hospital bed. if you have a mobile fone with you then call the hospital switchboard and ask for the rheumatologists secretary and tell her where you are and need to see him/her.

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Edited by Admin first it is insisting on being taken into a hydro pool, next it is insist on seeing a rheumatologist or ask for a complaint form... not considering other patients at all. What should happen to all the rheumatologists other patients - those that need disease modifying drugs, those with degenerative conditions, those with rheumatological conditions ? It sounds like the hospital are trying, the pain team have given strong medications etc.

If unable to walk more than a few steps is hydrotherapy even appropriate? Should someone with gastritis and bleeding be allowed in a communal pool?

I’m not intrested in your opinion all you’ve done is upset me you know nothing of the facts your pushy and opionated your totally negative do not message me again

I see you have a rheumatologist , has he said what's causing all this pain other than your back/stomach muscles, hope they have given you something for the pain, dont be too eager to leave hospital , I know we all want to go home but you know what happened last time, make sure you are ok , at least you're cosy and warm, it's cold outside lol , take care hope you feel better soon

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I agree with you but I know I’ve been pulled around for 6 weeks they thought I had cancer of the womb bleeding biopsies ct mri dr gave me wrong hrt enlarged womb lining ultra sounds and I think my body can’t take anymore I’ve lost a stone gastris in endoscopy test and this morning I thought no more stop I’m done I miss my home my geriatric cat and peace x

I bet you're fed up, I was in hospital for two weeks when I had a blood transfusion and tests as the RA had made me anaemic and they used to wake me up in the middle of the night for blood tests 😳 and I begged the young Dr to let me go home for weekends and come back in Monday morning, he agreed as long as. I Didn't tell the consultant when. I came back or he'd get in trouble lol, luckily the hospital wasn't too far away , have they given you any idea when you can go home, keep your chin up, easy to use say isn't it, take care

There’s no forward in here I’ve done everything I can with a chocolate tea pot physio I can do better at home as you know you can’t sleep you just want to escape the nurses have given me new Walker frame?& to sleep in my own bed tonight undisturbed x

Hi Sjsl, So sorry to hear you are feeling so low. I do hope you get some relief from the pain and hopefully get home soon. 🌷

Thankyou god give me the strength to carry on this merrygo round just a break a bit of normal I would be grateful x

I’m so sorry to hear that you’re suffering so much Hun. There’s nothing worse than feeling so ill and then being stuck in a hospital room. Im not surprised you’re feeling so down. You can’t sleep in a hospital with all the noises going on around you.

I truly hope that you find some relief from all the pain soon Hun and that you manage to get to the comfort of home soon.

Please take care of yourself and lots of love and hugs to you xx🤗🤗

Thankyou for your kind words the lack of sleep privacy isolation is mind blowing every pill they’ve added has caused a day backwards I know I will do better at home than this so much was going on when I came in gyne gastro rhum pain team I’m a home girl always have been I’ve decided to go home there’s no foward just waiting for a magic wand x

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Hi I detest hospitals private or otherwise. Souds like the sooner you are out of there the better. OROMORPH. What are they playing it? If making you vomit where is the rationale in prescribing or administering it. Ask for the dihydrocodeine.

I cannot take oromorph causes constipation and depression . Nurse Gladys has the good suggestion of ringing up the Rheumys pa and advising them what is going on.

SHOWER.

How crazy that the hospital has a shower that disabled people cannot use.

PHYSIO

Could be right re posture. Has she done an assessment of your back? Have you had any scans done on your back?

HYDROTHERAPY.

What kind of a hospital is this? Where is it, will avoid .

Keep strong, this is just a blip. I think you should stop the oromorph but... A change of fiet, drugs can make matters worse. Best to get back to usual routine and home comforts asap and get out of this prison like atmosphere for your sanity's sake.

I would raise concerns with the CARE QUALITY COMMUISSION as well as locally.

Don't let this hospital grind you down. Hugs xxxxx

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You mean a hospital trying to help by prescribing a stronger pain killer. Heaven forbid. Another one thinking the rheumatologist can just drop everything. What an absolute joke.

Edited by Admin Complain to the CCQ ? I bet they throw your complaint in the bin.

Care Quality Commission is a very professional Organisation and take these matters seriously.

One can report anonymously.

Suddenly stopping Dihydrocodeine is not the norm due to withdrawal signs and symptoms.

Oramorph is not usually prescribed for chronic pain. Thanks.

I'm well aware about the CQC thanks having been involved in inspections.

oramorph and oxycodone are both stronger opioids so withdrawal isn't an issue.

Oramorph was prescribed for an acute flare up. If they hadn't prescribed anything stronger you would be telling us to complain to the cqc that they didn't prescribe strong enough painkillers or manage pain appropriately.

Anyway i'm out - it's clear your opinion of poor care is different to mine. The complaint to the cqc will go in the bin, or more accurately the recycling box.

The cqc awarded frimley park a mixture of good and outstandings. So they were clearly happy. Overall outstanding.

I think you’ve hit it on the nail my sanity I’m on dihydrocodine anyway for 4 years so any other they’ve added are making me vomit enemas you get the picture I’ve had every test ct mri endoscopy womb biopsies my body is exhausted I’ve done hydro in good weather 6 which I loved my flare ups are weeks in the winter my husband finds it very hard to except as I was beyond fit before & very strong physically I know it’s the right thing to do even if he dosent agree with pain clinic finished course last Oct still with them app March it’s Frimley park hospital park side Surrey

Good to know which hospital. A hospital awarded a mixture of good and outstanding.

It may not feel like it, but I think you are quite lucky. A lot of other hospitals would be even less helpful.

Am I right in thinking you're on a private ward, either you're paying or you have private insurance ? If so this is what I'd do ( but I can be a right bossy cow when I have to be) I'd do the same in an NHS hospital but I know some people feel awkward demanding answers from an overstretched service.

I'd arm myself with a notebook and get a doctor there quick. Tell him/ her to state what tests have been done so far. What the results of each are.

Then what are they going to do about each condition. ( they're separate, a womb condition is different to mobility but it's easy for a hospital to just lump everything together)

If any of their aims for treatment are not acceptable to you, tell them. If you feel proposed treatment is not adequate , tell them. ( I'm thinking pain clinic, hydrotherapy)

If they don't intend to do anything to help you what is the point of being in a hospital ?

I've only had to do this twice before (40 years ago when I was pregnant, then after baby was born) First occasion I accepted their reasons for me staying in hospital, second I saw there was no point in staying so said I'd discharge myself. Within a few minutes they'd decided I could go home.

As I've said, this is just what I'd do, but I'm not you and not in your degree of pain. But demanding answers and getting a plan of how they intend to help you may feel you get some control back.

Sorry to hear your struggling , I know it’s incredibly tough . Have they indicated how long you will be there etc ... you can of course discharge yourself but it sounds like that last time wasn’t a great idea . Do you have somethings like a portable DVD player / laptop that could be used to distract you etc

Hi there

That’s exactly what I did last night It’s not the 11 days it was going on for 6 weeks cancer test womb problem exhaustion comes a point you say no more someone said I should be grateful I’ve paid all the way I just wanted to walk out of hospital not be pushed out physio to young to inexperienced

I’m with good pain team who I will. Sort with on my own back to be home I’m truly grateful

What are you suffering from ? Is it just fibromyalgia in terms of pain ? As above if the care is that poor why don't you discharge yourself? A lot of people would be grateful for the treatment, where some can't even access even very basic care.

Hi there

Fibromyalgia CFS my womb lining was enlarged as gp of 20 years have me wrong hrt been taking for 5 years when I arrived at hospital the first time I was in a severe mess couldn’t stand bleeding etc & done in the hrt had made my womb lining 22mm thick when should be 4mm that’s why they did cancer biopsies I’m 52 then from there it’s been down hill

I know frimley from 8 years ago when I was in for 6 wks it is outstanding but this experience has been shambolic yesterday I thought where is this going I’ve had main tests no physio input none pain team want to dose you up on oramorth oxicodeine no thanks I tried vomiting I could not eat I could not sleep fibro flare up understatement I couldn’t lift my arms up to clean my teeth and I’m a strong girl I trained horses for a living I listened to all the consultants one is the gastroenterologist that looked after me 8 years ago and I trust him implicatly so I signed my self out you cannot use hydro pool as an impatient I’m with my own pain team at St. Peter’s hospital chersey you cannot get through to a 19 year old physio who is clueless I wanted to walk out of there I came out in a wheel chair as for lucky it has been the worst 6 weeks of my life waiting for results to see if it’s not cancer gp cockup not mine I struggle badly with fibro it can be crippling I’ve paid into private care or paid cash I worked all my life up to 4 years ago grateful no I’m on the same pain killers I went in with

Only good thing is no cancer and to be at home

A 19 year old physio is impossible as its a 3 yr degree at University.

Do you have a thing with age ? Do you dislike being helped by people younger than you ?

If you are complaining about the pain and can't walk for a few minutes do you not think it is reasonable the pain team tried something stronger ? No -one can force you to take oxycodone or oramorph, why didn't you just refuse?

secondly if they believe it may be cancer then from GP referral to consultant testing should be less than 2 weeks - if they have a biopsy it doesn't take anywhere near 6 weeks to test. Secondly just because they test it for cancer doesn't mean it is or isn't. I really hope things do get better, and obviously if you choose to complain things improve for others. Should your grievance not be mainly directed at your GP ?

If I had cancer my gp would. Be sued the test for biopsy was 16 days wait then my go got results back In 2 days

I pay for experience & knowledge not a hamster wheel

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When your in agony you will try anything when your bleeding so heavy you can’t stand up as for physio pathetic my husband wanted me to walk out of there upright as I did when you’ve not slept for weeks your fibro flares badly I’m not sure where your going with this but it’s not helpful not one bit

nor is criticising the staff who tried so hard to help you. By your own admission you saw the medical specialities, you are in pain, and they prescribe you something stronger and you still complain. They really can't win. Same with this whole 6 weeks cancer thing. You've now just admitted it wasn't 6 weeks.

I was under the impression the NHS is free, so not sure what you paid for ?

Maybe your husband is right.

Edited by Admin Do not message me

Edited by Admin. Discrimination is illegal. Based on AGE, gender, ethnicity, disability etc.

If you didn't like the physio because of her/his ethnic origin would you also comment on that? Edited by Admin

💗💗💗

Due to the disruption on this thread, the replies are now switch off :)

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