Help needed please & any advise very ... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Help needed please & any advise very welcome.

Shoredith profile image
10 Replies

Please can you advise me on how to get help from my GP? Is there any booklets available on this condition which is ruling my life. I am currently unable to bathe myself, get dressed, prepare food, even eating is difficult due to the constant pain, so I find myself 'doing with-out' as it's far less painful, messy, so difficult actually getting the food to my mouth!

I'm getting progressively worse, don't get dressed, there-fore I don't go out of the house, it's a no win situation that I find myself in.

Sleep is impossible due to constant pain waking me up, then that's me for the night, making me listless, depressed & annoyed with myself!

Being unable to bathe myself is horrible......Having to ask to have my hair brushed, put in the shower & bath, then washed is so degrading, then I have to wait until my family are able to help me with these things which are really basic personal hygiene.

No one seems to understand, as I've so many physical problems related to pain, they don't want to know.....How can I help them to listen & to understand me.

Life at the present time doesn't seem worth living, not like this.

I'm not a stranger to pain, I do have a high pain tolerance, as I've had a 'Cervical Meningioma' in my neck & spine, entwined around my cord & Carotid Artery, had surgery many times to remove tumours, apart from to the artery as an aneyurism was found, so it had to be left until the anyurism was clipped & has just been left at that ever since.

All this nerve damage causes terrible pain it's like having a huge electric shock running from my spine & down through to my limbs. Have coped with this for years, these symptoms now are really getting to me, so please any advice would be extremely welcome as I'm only 51, yet find myself shuffling about like an old woman.

Much appreciated, regards to all of you that are suffering too.

10 Replies
Amanda profile image

First thing on Tuesday ring your local council and ask for the Adults with Disabilities team.Explain that you need to see a social worker asap.The social work assigned should do an assessment of your needs and give you some idea of the help available.Also make an appt with your GP as an emergency.

Shoredith profile image
Shoredith in reply to Amanda

Hi Amanda,


Had no idea such services via the council existed, or that I'm able to access a social worker through them, I shall do this on Tuesday morning.

I feel as though there is 'light at the end of the long, dark tunnel' that I'm finding myself in, which is very difficult to get out of once I'm this far down.

You've given me so much hope in a system that I really thought had failed me.

Getting an appointment with my G.P may not be easy, just getting through to them on a 'normal Monday' is difficult, so after the long holiday will be near impossible, I will certainly try my hardest though.

I'm worried about requesting an emergency appointment, as the receptionists find it difficult to understand my position & why it's an emergency. My own doctor is on Maternity Leave, I phoned for an appointment approx. 3 months ago, was offered a 'Telephone Appointment' with one of the doctors in my surgery, which quite honestly was a waste of both her time & mine, (I had to wait 3 wks for this!), unbelievable, yet true.

This G.P. actually informed me to make an appointment with the G.P. who's panel I had been put onto next day when surgery opened.

8.30, I began the quest, 15 times I telephoned to try get through to surgery, when I finally managed it, I was told that G.P. that I had been put with had been absent for 2 months & they had no idea when he would be due back! What was the point of the Dr. that I had spoken to on the telephone a day earlier telling me this????? Their consultation rooms are next door to each other....I felt as though I was being 'led a song & dance', to put it mildly!

I know that perhaps I'm rather a 'mouse' & don't push myself enough. Now though, after all the kind, thoughtful. caring people that have answered my plight, it has made me realise that if all of you can offer so much help voluntary, when you're all suffering yourselves, that an appointment with a doctor shouldn't be a huge dilemma that it appears to be, I never actually go there or bother them, I just get repeat prescriptions for my medication & have done so for the past 10+ years.

I can't thankyou enough for your advice, I'm now informed to what's available out there if only I ask for it, after the horrible time that I've been having, I'm sure that with the aid of moral support, realise now that to get help, I'll have to help myself first by asking for it, which I intend to do,

Many, many thanks, kindest regards & I hope that you are coping with your illness.

I shall keep you all informed as to the outcome of my quest to get an appointment.

jom277 profile image
jom277 in reply to Shoredith

Please be patient when you call adult social care. It will probably be a call centre that will do a small screen to ensure you meet the criteria. With what you have said, you will be eligible.

As we have had a 4 day bank holiday, the back log will be long in most areas but a social worker will call you back, though it may or may not be tomorrow. I am a social worker for older people and physical disabilities.

Although we aim to assess within 28 days from when you self refer. This is not often possible, not enough time, workers, etc.

Be very honest when you speak to the social worker. Say everything you have said above that you cannot do. Washing, dressing, your hair, meals, etc.

In our area, like a lot of cases go to the enablement team.They come out and assist you with a period of time, so they can get a better idea of what help you need. They also work with occupational therapists who can look at aids that you may need, such as a bath board, rails and something to get out of bed.

I have an extra stair rail, bathboard, etc. I also have help now through a direct payment for assistance with a daily shower, dressing bottom half, help with meals as I have a minor in the house and as I am a single parent, I have social activities for her as I am unable to walk or drive far. This has made a tremendous difference in my life. As I am not wiped out trying to get up and dressed in the mornings or my 11 year old doing it. I have been able to work 20 hours a week. I can then have a lie down before my daughter comes home.

Good luck, remember to be completely honest about the extent of the help you need and hopefully you will get the assistance required.

If you have other queries let me know. Like said above we are all here to help each other out.


ladymoth profile image

Hi shoredith,

There are plenty of sources of info available on our website.

But first, because of the extensive surgery that you have had in the past, are you confident that your symptoms are not due in some part to your previous illness?

It's common for GPs to say 'Oh it's just fibro', but given your past history, I would want to be sure that nothing else is amiss.

You don't say whether or not your GP is usually helpful, or whether you have seen him recently, but judging by the amount of disability you are experiencing, I would advise that you do see your doctor and ask for some further investigations. I expect that you've been under the care of a neurologist in the past, so maybe ask for a referral back to them?

If all else is clear, and your problems are definitely related to fibromyalgia, then a rheumatology consult would seem a good idea, as no one should have to put up with severe pain and disability and remain untreated.

We usually advise that people write a list of their problems to take along to surgery, take someone with you for moral support if possible, and insist that your doctor takes action to get you some proper treatment. Hopefully, that will get you some attention and help.

We have lots of tips and helpful info., but please make sure that you have had proper medical care first! Do let us know how you get on - if you are desperate over Easter, you can always call 111 for urgent medical advice!

Love from Moffy x

Shoredith profile image
Shoredith in reply to ladymoth

Many thanks Moffy for your reply, it's much appreciated.

You've pointed out to me so many factors above that all sound like excellent ideas, of which I shall try.

Yes, I do agree that due to my medical history neurologically having been very complex in the past, that all this should investigated by a neurologist to rule-out any problems there, as it is years since I had a M.R.I scan, tumour around my carotid artery has never been checked in years either, so that needs to be addressed firstly by my neurologist.

I shall let you know how I get on with my G.P. & hope that I do get an appointment with my neurologist who can 'set the wheel in motion'.

I do need to be more 'forceful' in my actions, with regard to my doctor to take some action, which is my own downfall, they only need to take a look at me to realise that I have severe problems, look at my medical history, test my reflexes which don't exist.....If I could express myself verbally as well as I can to you, I would be in my neurlogists office!!!!!!

The difference being is that you care as you're suffering yourself, know what it's like to be in constant pain, feeling despair, fatigued & everything else that contributes to the misery of illness, which makes all the difference, plus I'm not thinking, 'I've only got 10 mins. to explain my problems to the doctor'.

You've helped enormously, the tips on making a list to take with me to doctors, having some moral support & insisting that I can't go on existing as I am at the moment.

Almost forgot, thanks for the 111 phone number for over Easter, never knew it existed!

I hope that you have a Happy Pain-Free Easter.

Kindest Regards, xxx.

LindseyMid profile image

The articles on Becoming an Expert Patient on the page below may be of help:

Yorkshiregirlie profile image

You poor old thing! Coping with fibromyalgia, even with support, can often feel like fighting a losing battle. However, as others have posted above, the first thing is to get a definitive diagnosis and, if your GP is unable or unwilling to help, get a second opinion and insist on being referred to a rheumatologist. There are drug options available for treatment but do be sure you are au fait with the side-effects as sometimes these can be worse than the condition. I am including a link for the UK Fibromyalgia Association as they produce a regular newsletter which is most helpful. (Here's the link: fibromyalgia-associationuk.... Also, there are a number of self-help fibromyalgia groups, most of whom seem to advertise their services at GP surgeries, chemist shops, CAB, etc. Like you, I usually have to cope with my condition alone and have discovered a number of coping strategies. These include: lying down for about 15 minutes several times a day (I read recently that this allows the adrenals to 'rest'); this seems to offer temporary relief, heat applied to most painful areas (I have a wheat pillow I warm in the microwave) which helps too; watch your diet - some foods act as triggers (Chinese pine nuts for one) - more info on this via the Fibro Association but I also organised my own food diary, making a note of what foods I ate each day and then monitored how they made me feel. I think this is strongly tied in with IBS, often caused through coping with the stress of fibromyalgia. It was in my case, anyway. But the one thing I have found most helpful is forcing myself to have a positive frame of mind about my symptoms, conditions, depression, etc. This won't be easy as I do understand you must be feeling pretty low and in constant, dreadful pain but I promise you that spending 5-10 minutes, a few times a day and night, speaking or thinking positive affirmations (I am free from pain, I am able to cope with my condition, I am free from fear...really, anything that is relevant to you and your condition) can and does help. I know it's a bit airy-fairy for a lot of people but when you're feeling rotten and alone, grasping at straws does sometimes yield benefits. I do hope any or all the information above is of some help and that your condition improves to allow you to have some kind of 'normal' life. Be kind to yourself, love yourself and know that you're not alone. xx

ladymoth profile image

I do agree about the positive outlook, Yorkshire!

On the occasional day when I've been pretty much useless, I just lie back and try to enjoy the tranquillity, take my highest dose of pain-killers, and think, well, tomorrow will be better!

I have also found PMR (Progressive Muscle Relaxation) to be surprisingly helpful. It's the same relaxation process you get taught during pregnancy. It didn't work at all on labour pains, I have to say, :( but definitely helps the pain of fibro!

Moffy x

Shoredith profile image

Thankyou so much Yorkshiregirle for your prompt reply & answers. It's great that you understand me, you listened & it means so much that they're kind, thoughtful people as you are that are willing to help me, come to my aid & share your experiences, I'm very grateful!

As for 'grasping at straws', I'm delighted to try anything that may help, such as you've explained perfectly to me, so I shall try what you've suggested as from today.

I'm having to 'wipe away tears' at the moment, not with feeling sad, due to the fact that you've given me hope when I'm in a desperate situation, you've helped me more than you'll ever know.

I'm pleased that you're coping with this rotten illness, you deserve to, you must be a wonderful lady to offer me all this, it's appreciated, thankyou. To know that I'm not & don't have to suffer alone, is in itself, so uplifting in my spirits. Your last words, "Be kind to yourself, love yourself and know that you're not alone", are beautiful, true & welcome.

Wishing you a Happy Pain-free Easter!

Many many thanks xxx.

gardaqueen profile image

Like you I tended to get tongue tied every time I saw my Doctor. I would IMMEDIATELY forget all the things I wanted to mention when I entered his room - almost as if I am in awe of him.

A friend called around one day and while I was talking she kept jotting things down. When she left she handed me the piece of paper and said ' Take this to your Doctor and tell him you need to discuss everything on the list.

It worked.

I had been so judgmental about the help I was getting from the doctor - but to be fair to him - hed had no idea how bad I was - because I never told him.

Keep going with this, you will get there. People on this site never cease to amaze me! When I feel low or exceptionally ill or tired I come on here (when I can). There is always someone worse off than myself (usually they are the ones that cheer the rest of us up with their anecdotes and personal experiences).

I only discovered this site a short while ago - but the health profession could learn a lot from it. I have started to try some of the self help tips I have found on here - and though they don't all work, they are worth a try, and some of them certainly work. Also I have found that mentally I am in a better place knwoing there are a whole bunch of people who understand. It always surprises me that no matter what questions are asked 'Up pops someone' no matter what time of day or night, with a response whether it is an anser or just support.

What Yorkshiregirlie said is absolutely right : Only by looking after yourself and being kind to yourself can you contribute to other areas of your life. I went through a phase where I was always apologising to people for the way I am - but I didn't expect an apology off my other half when he had a heart attack, or off my Mum when she had a stroke - they couldn't help being ill, they didn't ASK to be ill - and neither did any of us!

You can probably tell by this post that at present I am in what my Daughter in Law calls 'wittering' mode - so I'll shut up!!!1

Take care of yourself and keep us updated.


(hugs and all sorts to you)

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