Feel so alone with Pain and SCARD just want to give up SCARD of my GP help please can't carry on with pain ..

[Greta007]

What do I say !!! The pain to walk the pain all in my joints I have very bad jerking which is so hard to control I bite my tongue and burnt myself threw this jerking swollen hands and feet feeling very dizzy and can't sleep and when I do I fall out . I have a very sharp pain in my head and to walk it hurts in my back . And the sad thing is 3 years ago I use to go to the gym and clubbing and a right party animal till the day I bent over to lift a nest of tables and crack I heard in my back , I spent Christmas in hospital as I prolapsed my back and bleed in my spine I was so close to a wheel chair then my hand closed up in a claw for 3 weeks and the GP thought it was MS had tests and found white patches in brain but not to worry about they said they normail . I'm trapped in pain I false myself to try and get up but the pain in my joints and swelling grabs me . Now they say I got Fibro sorry can't spell it . Any ideas xx

[ladymoth]

Hii Greta,

I'm sorry that life is so hard for you at the moment.

You really do need medical help - can you tell us why you feel scared of your GP - have you had a bad experience with your doctor that makes you feel like this?

We can help you with tips on how to make the best of life with fibro, and we can support and comfort you, but with such severe symptoms you must obtain some treatment from your doctor, and have them refer you to a specialist.

Moffy x

[Greta007 in reply to ladymoth]

Hello Moffy.. I feel so SCARD as I some times feel is life really worth all this pain I'm in and there's no help from my GP he gets very cross as he says to me I'm in a depression well I am but I'm depressed with the pain .The hospital says I have Fibromyalgia my feet and hands swell up I can't sleep as I spend most of my time jerking my whole body I bite my tongue my discs in my spine are getting worn but they said its age and the 2 white spots that are 5cm which they said is normail most people have them the pain to walk makes me cry and I'm tired of being in pain and because there is no cure for me the specialist has called it Fibromyalgia . I use to before go to the gym and pain free ,, I have 2 horses that I false myself every day to feed them as I did lots of horse ridding before this evil pain came to me ..Greta xx

[tinkerfae in reply to Greta007]

my gps have backed n forth a lot and the lack of nswers makes it feel hopeless at times, I too ws pretty fit, the worst has been the last yr, ur symptoms are exactly wht im going thru right now too, I never hd the jerking until a few months ago im only just got refered to a neuro person. I got used to them sying it ws fibro and ffound good support here, then 1 rhumtologist said it wsnt and I got really scared again, but now the dr is saying it is fibro, lthough its not curable I like to give what im fighting a name, for me it helps nd there is some gret support available. I hope u feel better soon, just reding ur story hs made me feel little less hopeless than I ws, so thank u and big love xxx mia

[Hidden]

Can you take someone with you to the GP.. If you have already tried this is it possible to see another GP in your practice or even change gps altogether... You could also write your GP a letter explaining how you feel and address it to him personally ... I have gone down this route with very positive results ... My GP and I now have a great patient GP relationship

As moffy says you do need to get treatment so I hope one of these suggestions is of some use to you

VG x

[ladymoth]

Too right! Your GP has no right to be cross with you, and you shouldn't put up with it!

There's no doubt that Fibro is difficult to treat, but most of us manage to get suitable treatment so that our quality of life is pretty good.

I do hope that ypu manage to work something out with your doctor, or change to a different practice!

Moffy x

[Cookie72]

Sorry to hear your pain Greta, I guess we all understand what unare going thru, I've been feeling like you, the pain is so bad can barely walk all joints are painful and swollen , u would have thought after 50 yrs I would be use to it, but I'm not I don't think you ever are, sometimes I feel like giving up, but then I say to myself why the hell should I let this fibro win, it's not that easy I know but worth trying, like you I went to the gym three years I use to go aqua, but cant go up the steps from the pool that easy now, what meds are u on, I'm on gabapentin, tramadol, serttraline , and cocodamol when the going gets tough to top the others up, don't forget we are all here for you, they are a great bunch, and do try to cheer you up when your domn, they are quite a laugh, hoping you have a better day tomorrow, gentle hugs to you ...Dee xx

[suzy1]

Hi, I am really sorry to read of your obvious distress, please do try and see a different doctor and take a fiesty friend. I am not a doctor but have worked in pharmaceuticals for 21 years and pretty much know what I am talking about in consultations, but even I find I don't push things for myself and others can get more for me at times - so it can really help having someone you feel is on your side there. I am surprised they are saying it's not MS - as it does sound similar but I am hoping that given your symptoms someone might prescribe you pregabalin or gabapentin - having been created to treat epilepsy and licensed for FM maybe they will work for you. I so hope you get a kind and listening ear from the medical world soon and you get a treatment that will enable you to enjoy your horses again even if you dont quite make it back to a major gym bunny. Until then if you need to let off steam - I will look out for you on here and offer any support as I can see other's on here do too. xx

[Jo61]

Greta - I am so so angry at the way you are being NOT treated. No one should have to be afraid of their GP.........as others have said - do you have someone to go with you - and if not a friend have you tried a local advocacy service or other voluntary group who may be able to support you............it is not acceptable for you to feel this way and it is not necessary - yes Greta, life is worth living, even with this horrid condition because it can be managed and you may yet recover that old you. Please do not give up.............and we are all fighting beside you!!

[rosaann52]

Ask to see a different doctor...If you have a partner or a friend to go with you take some one.....'you'd be surprised what a difference it can make having a 'witness' with you request that you should be referred to the 'pain clinic' or if you can get the funds together ask to see a pain specialist privatly for your first assesment....you'd be surprised how quickly you'll be seen...I did this last November because of chronic pain in my hip...I'd had it for at least 5 years..... and had been told it was in my mind..within 10 minutes being with the pain specialist he diagnose a trapped piriformus muscle....3 injections later and different medication I'm a lot better.....It cost me my last £400 for the first appointment and 1st injection...but it was worth every penny to be listened too and get the right diagnose's....but don't give up getting the right treatment....you know how feel it may take a bit of time convincing the Doc but keep at it...best of luck

[Malwimmy27]

Please don't let your GP bully you. I had problems to start with just getting co codamol. I was later referred to the pain clinic and seen by the consultant. Since then GP has been much more supportive.

You could also write a letter to your GP and send a copy to the practice manager. Good luck with everything. I hope you get the support and care you need. Please let us know how you get on.

Becky. X

[Hidden]

I am a little concerned about the sharp pain in your head. First thing you need to do is ditch your doctor, and find another doctor. You need to get your head seen to and treatment.

Good luck. XX

[Greta007]

Hi Every one .. Thank you for your support and advice . I have had a awful weekend ,yesterday I couldn't get out of bed the pain was driving threw me like it had full control of me the pain in my muscles and joints is so painful my hands look like a boxing glove were they are so swollen even to walk to the toilet is hard work I couldn't get out of bed till 2pm yesterday and then I stayed awake all threw the night till now ,The med I'm on is 150ml of Morphine which is a tablet 60mls in morning and 90mls at night then 300mg Gabpapentin and 100mg Lustral and 10mg Diazepam and Oarl Morph when needed as I did have a pro lapsed disc but now the doctor said my discs are worn threw age as I am getting on 47 I woke up two months ago and my hand was locked in a claw for 2 weeks which really did hurt I also find it hard two swallow some times . I don't like the idea of the thought of having 2 . spots on my brain but yet again they said its Normail they said every one has them my whole life style has changed and now they said all this joints pain and swollen hands and ankles and headaches and feeling depressed is Fibromyalgia. I feel totally lost my doctor has told me there is nothing he can do for me so in all fairness if he won't help me then there is not much point . I wish I had family my mum lives along way but I miss her I could do with a mum hug but that's even not possible every think I love dies on me I had a little boy who was 2 yrs who died at Christmas which was while ago December 22nd and my dad he's very poorly and will never get better so the company I always have is pain ...Greta xx

[Greta007]

Hi Every one who has written to me I really cannot get over how supportive you have all been a very BIG THANK YOU I just find it very hard to under stand why I am on a very high dose of Morphin and also all the other drugs ..There was one doctor who did say that it sounds like MS as for my hand that locked in a claw and the white patches on my MRI and with the fear of swollening . All I know today I got up and it took nearly 30mins to get out of bed threw the sheer pain in my joints and mussels .. I have to see a bladder specialist this week as I'm loosening the feeling to need to go . But I know one thing I keep wanting to fall asleep I could fall asleep standing up lol .Im also worried I get help and support with DLA and the next thing I can see happening I will loose that dose any body on here get that help with Fibromyalgia and would it be right to say to say that Doctors use the term of Fibromyalgia when they don't under stand what the cause of your pain ? ......Look forward to here from you dear friends it just nice being able to chat to people with out been told off and again I'm worried as my GP said with this Fibromyalgia I will need to been sent to a mentalist Hospital to talk to some one who can understand my thoughts .i cants see why cus I'm not mad I'm just screaming out with pain because at the moment my only company I have is my pain Any way thank you guys for just being here and for talking to me I really hope you don't mind I don't want you guys to get cross or fed up with me ... Greta xx

[Barbie67]

Hi Greta I'm so sorry to hear of your suffering. Seems unusual that you are taking such a lot of morphine, that will knock you out. I'm surprised you can get up at all in all honesty. Also surprised that taking such a large dose you are still in such pain.

You need to stand up to your GP and demand a referral to a neurologist to rule out MS.

Once that is ruled out you need a referral to a pain management centre, to get the pain under control, whilst still maintaining some quality of life.

You also need to see an bone specialist about your back.

It would be useful to be with your parents. Can you not move back home with them for a while? Being on your own must be very hard when you feel so bad :/ if you we're local to me, I would pop round and help. I'm in Nottingham.

Please keep us updated at least daily of how you are feeling xxx