I am so fed up

I keep trying to stay positive but I am finding hard to keep going at the moment

I found out today by phone that my MRI I had before Christmas of my hip and back have come back clear there is nothing wrong. Well I wish that the powers that be could tell my hip

I spend most of the time in quite a lot of pain. My hips are the worst but also have severe pain in both hands , wrists and fingers also in my ankles and shoulders

I just don't know where to turn now rheumatologist says nothing is wrong. The pain I get has made me almost housebound, and I can't make the stairs very well due to pain most days.

I know I also suffer from severe depression which doesn't help.

Since I got the phone call I can't stop crying. I phone my mental health team for help as I can't remember being this low for a long time and I know I need help only to be told its the weekend and they are closed ring back Monday I tried my gp who I wanted to leave a message only to be told he is not in today so I can't leave a message and ring back on Monday. As I am writing this I am at a lost where to find help. I feel so low and am in so much pain I don't know what to do

The weekend is such a long time to be alone and with the hospital saying I am not in pain is pushing me over the edge and I have run out of places to get help

Does anyone have any good ways of coping with the pain and depression

Also does anybody else have there whole body jerk with no notice like a gaint whole body tick which can happen if I am asleep ( it wakes me) or just while I am watching telly. The jerks can be really painful if there are on part of my body effected by pain

I am so sorry for moaning I just can't take anymore

Caroline xxx

12 Replies

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  • This sounds like a fibro flare where everything aches and hurts and nothing shows up. That's the most devastating thing about fibro you have all the tests to find out what it isn't and you are still in pain. I know how overwhelming and depressed this can make you, you feel like it would be better to have something solid and noticeable to be wrong with you so it can be treated...

    Are you on meds for pain and depression they might need a change in dose or a complete overhaul to mind something better to help you.... My anti depressant I take now for sleep was the 4th I tried the rest didnt suit...

    Do you have anyone at home with you who can support you over the weekend

    There are always the Samaritans as well who are always there to listen samartians.org and of course there are always people about on here who know how you are suffering and will never judge you.

    Please just hang on in here until Monday when you can speak to your mental health team and get to see or speak to your GP

    VG X

  • Pain such as you have is just what fibro is about. The scan doesn't show major joint problems because that's not where it attacks, but we all know how real the pain is. You need to be seen by a rheumatologist who knows about fibro - a lot of them have no interest in this disease.

    Right now, you urgently need treatment for your pain,and for your depression, and you would be quite justified in going to A&E for help as your GP is off duty.

    Alternatively, you could call NHS Direct - they are available 24/7 as are Samaritans, who are well-used to talking to people who are desperate with any problem.

    samaritans.org/

    nhsdirect.nhs.uk/

    Don't be afraid to ask for help. the hospital are not saying you're not in pain - they're just reporting no joint involvement on the scan - you would expect this with fibro.

    Please don't suffer alone, call someone now, and they will get you through the weekend.

    Also, please let us know how you get on .

    Love Moffy x

  • If you are under the mental health team, you should be able to contact the out of hours crisis team.

    I hope you are feeling a bit better soon. Fibro flares are the worst, have been in one myself at the moment.

  • Thank you all for your kinds words

    I am on my own with my daughter

    I find it so hard to try and get help when there is nothing on any medical report to say a reason for my pain. It makes me feel like people don't believe that I am in as much pain as I say I am in

    This time last year I was healthy and didn't even take a paracetamol now I am on both MST and oramorph My gp is really good but will have to wait til Monday to speak to him. My whole world has fallen apart with this pain. The pain is all that I am it runs my life. I try not to take loads of oramorph as I know it's not good for me but it does dull the pain down to a roar and stops me being in tears

    I am trying to think positive but its hard. Roll on Monday when I can get help it seems such a long way off

    Sorry again for being so down but I seem to have lost my fairy dust of positive feelings

  • keep on talking to us, as the above replies show we care and we understand.

    you've had a shock with these results and it's naturally shook you up.

    when someone tells me something that shocks me I cannot take anything in - they could end the conversation with "and so were giving you £2000" but I wouldn't hear it.

    just because the x-rays were ok doesn't mean you do not have pain, pain doesn't show up but it is so debilitating - look at back pain.

    I've called the samaritans before now just to be able to say how I feel - I've never been suicidal, just very low. I could tell them how bad things were which I couldn't tell my family and they listen.

    take care,

    gentle hugs (( :) ))

    sandra.

  • Hello Caroline, take it steady, we are here for you. I have not heard of these meds before, usually we seem to be on Amitriptyline and Lyrica [I am on both] which treats the nerves sending you these messages.

    My hips are my main pain area, but it comes and goes - you get to be able to ignore low levels of pain after a bit. My hands are awful when they join in. Currently its my lower back and I am using a TENs machine to help with that. Have you heard of it before? There are some guidlines but it doesn't interfer with your meds. I have 4 pads attached to a battery pack which delivers controlled bursts to the areas in pain. If you follow the instructions and get it right, it can get your body to help itself. You could get one from your local Boots on Saturday if you can get yourself there or a friend could get it for you?

    What you have been told is right, it sounds like your rheumatologist is not the right one, ask for a second opinion [you are entitled] but it may take a while. Ask for cancellation appointment and stress its urgency.

    Revisit your doctor on Monday and talk through what FM means. If you have any concerns ask if there is someone else at the practice who knows more about FM - if you don't want to do it that way, ask the Receptionist when you ring for the appointment.

    The meds I am on not only treats the nerves dulling the transmission of the pain and discomfort but also deals with depression for others. Maybe your dose could be looked at to help both? I don't know, I no doctor. I am on Co-Dydramol for the pain - 2 every 4 hours, which helps too.

    Everything I have said is my honest opinion and I hope it is helpful - I found Fibromyalgia for Idiots helpful too as it explains many things including possible medication, how to explain things to others etc.

    This week has been bad for me. I made the mistake of enjoying some music last weekend and its ruined my break. Today is day 5 of pain in my lower back. My TENs machine has got me through along with my usual meds but today...I could barely move without pain. Finally I gave in and called my doctor who called me back. After some discussion he mentioned some meds he gave me in November, an anti-inflamatory I am able to have [some affect my stomach] which I found I still had some of! What a difference. Can you use Ibuprofane? Good on your hands, hips and lower back. Don't overdo it because its still meds and can give you reflux [upset your stomach]. Check with NHS Direct that you can add this to what you are already taking.

    I do hope you get sorted out soon. I wish you could hear all our voices saying don't give up. You managed to come on here feeling really bad. I can't manage that. Pain has gone for now. I have yet to try the stairs for bed, to get undressed or lay down, but I hope to get some sleep.

    Sleep? Whats that? I use meditation music on my borrowed iPad [from work] maybe you could find some quiet music to listen to whilst you drift off to sleep. Sleep well. Things can and will get better for you. You have reached out.

    Soft hugs

  • Thank u so much for taking the time to write

    I am with u on the sleep front. I sleep for the odd hour or so and then the pain wakes me. I can't take any ibuprofen as I have bad asthma and ibuprofen starts me off. I am sorry u r in pain

    I am thinking about calling the mental health line but I can't see them helping

    I am trying to listen to all the great advice but as you no doubt know depression is a big mountain to climb made harder with pain

    It's just with every test result that doesn't help me prove I have pain is like another tick by the powers that be that will b used against me in my claim for ESA. The joke is I did have a good job that I could pay my bills from and now I have to claim benefits just to keep a roof over our heads. If the doctors could make be better no matter the treatment I would take it. I used to have a life, with a job I love, I now have benefits and pain. Do the government really believe that we chose to claim instead of going to work. I like all of you just want to get better

    Time I tried to get up the stairs to go to bed and try sleep

    Night night and thanks. Will try and be on here soon with no moaning its just been a bad day

    Caroline xxxx

  • Caroline sending you big hugs,hope your feeling a bit better today? We all know how your feeling Hun,we really do. How old is your daughter? Mine is 16 and I'm so glad I've got her,she is such a support to me,we look after each other. Have you had a diagnosis of fibro?

    Ali xx

  • Hello to everyone who kindly answered my question

    My mum always says things look better in the morning and I guess she is right

    As always the pain is still there but am trying just to get through the weekend

    I have yet to have been diagnosed with fibro but it is what my gp thinks I have got. He has said this since September but he was waiting for the rheumatologist to rule anything else. He is goingto send me to a pain team now. So I hope they will be able to get control of this pain

    This morning much to the sense of fun of my 16 year old daughter I put the washing machine on . I had put the washing power and softener in. Shame I forgot the washing. Something but daughter thought very funny and her reaction did make me smile. I am so lucky to have her. When she is around she fills the air with joy and is able to make me smile even when the pain is bad, or when her dinner is late as I have forgot to put the meat in the oven I turned on!!

    I hope everyone has a great day. Thanks again

    Caroline xxx

  • Hi Caroline, glad you made it through the night. Hang on in there. Your daughter sounds lovely and I am sure, when you are not in pain, you are just like her. Unfortunately FM has to be diagnosed by someone who really knows about it for the authorities to listen. Even then they prefer it if you have something alongside it like arthritis to believe you properly.

    There are plenty of idiots about, so make sure you have someone with you for every medical appointment, take copies of everything, make notes in a diary daily of the pain you experience, the medications you are taking - everything as evidence as you will need it in the future. This is so much harder to do when you are ill, we all know that, but maybe your daughter can help you with this? Maybe she could keep a diary too to help you with your memory as FM bothers that too. The more evidence you have the more people you have know about your position the better your chances of getting the help you need. As a working woman you know how to do all of this, so use your knowledge to help you both survive.

    Be a survivor of FM not a victim. Fight the depression all you can. What has helped me is having a little dog to stroke, to have to look after, to laugh at. I know they cost, but a little dog will cost less if you can have one. It has been proved that a pet to stroke helps depression. If you cannot afford a dog or don't like them a cat? Or even a guinea-pig [they can be kept indoors].

    Come back here when things are good or bad. Its good to share funny things, here are two for you:

    We sat for an hour waiting for the casserole to cook - only to find it sitting in a cold oven! I had put the timer on, not the oven! Took another hour but was worth the wait, plus we managed veg!

    My mother is selling her swinging settee - a Polish man went around to see it, sat on it and swung until he and the settee fell over backwards! He thought it was a swing, not a settee that gently swings!

    Take care of yourself. Soft hugs.

  • Thank you so much for the advice and I am going to start keeping the diary like u suggest.

    I have a cat called trouble and he loves cuddles. I am so lucky as when we got him my daughters wanted a dog ( I said no as I used to work up to 50 hours a week) so they took it upon themselves to turn him in to a dog. He is called trouble and will sit, lay, stand and stay and will play fetch! He comes home when u call him and spends the rest of the time sitting on someone. You are so right when u say it helps to stroke a pet. He knows when I am bad either with pain or depression and will come and sit next to me or on me and he follows me around. The only problem is that he is so funny and entertaining that I miss what I was watching on the telly

    Thanks again for your advice

    Caroline xxx

  • It is literally all part of fibro hunni. Pain so bad and nothing ever shows up on x-rays or MRIs because that is not the way it works. Fibro is a chemical imbalance in the brain, it cannot be measured, it cannot be cured. So we have good days and bad days and then we have the flares. It sounds like you are having a flare hence your pain is so bad.

    As for the bidy jerks, yes I get them, a lot. I can be going off to sleep and it can happen, or I can stand up to leave a room and it will happen. Normally when it stops I collapse in a heap on the floor. it can be very firghtening and I describe most of the ones I have as 'a wide awake fit'. As yet my GP has not found a reason for it, if it fibro or not I have no idea.

    We all get to the place you are at now. If your pain is so bad go and see you GP as soon as you can becasue the pain caused by fibro you can get pain meds for xxxxx

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