Hi I keep a look out regularly for snippets of info, and occasionally I do ask questions which always seems to be a moan. The main problem I have at the moment is in my lower legs the bone is the problem not so much the muscle. I put lots of pain killing cream on them to the extent my skin comes off. It begins in the middle of the night and never gives up. Does anyone have any ideas or wonder drugs. I take so many one more wont matter. Many thanks
Hope you are all having a good day.
Bye for now Love A xx
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Annabell
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i am having the same problem.i can feel it in my bone leading up to my hip bones,i didn't know whether to go to docs or not,as soon as i think that it seems to ease up,but no the pain is definately there,i could draw a line in pen where it hurts .jacksiex
Hi thank you for your reply. Glad to know I am not on my own. I know what you mean about the doctors but I dont think they can do anything. I went with my hands and was told I was on enough pain killers and nothing else can be done. I think fibro has another win. Hope you day is ok and tonight you have a bit of respite.
This was my first ever Fibro symptom, long before I was ever diagnosed. I find it worse in the cold but even in hot temperatures it is still troublesome. I have never found anything that takes the pain away, but codeine takes the edge off it when it gets really bad
Hi thank you for your reply. Yes come to think of it you are completely right before I was diagnosed when I sat by the fire I could scream with the horrible creeping feeling up my legs. I forget the signs as I just like the rest of us we live with each ailment that comes along. I do find that algesal cream does help but it takes the skin of my legs. You are right about the codeine but I take dihydrocodeine when it is really bad it works wonders but short lived. I am sure one day the clever americans will find an answer lets hope so. I hope you are enjoying your evening and not in too much discomfort. Got my feet up at the moment watching Watchdog. Will be looking for the chocolate in a bit.
My very best wishes and thank you for your help.
Bye for now Love A xx
I too have started having severe pain in my bones , where is this going to end !!!!!
Hi Kira I think there is no end woke up this morning with jaw ache wow I give up. Its like a lottery you never know what is next. Well I hope you are having a "good" day.
Hi. You said it but I suppose we are luckier that some people. This is what I tell myself when I cant move or feel so terrible I wish it was all over. This day gets no better. Sat watching Bargain Hunt and thinking the kitchen carpet could do with a scrub after this bad winter with a large labrador called Bruce who had diabetes is blind and deaf and also two cats one is mine and one thinks it lives with us. Well happy days. It will have to wait, probably a long time. Winter will be back soon so it wont matter. lol.
I know the frustration so well , I can't get out unless in my wheelchair, i miss driving so much, i miss my independence , and the thought of being like this for the rest of my life is so soul destroying. Take care of you , and try to find something positive to hole on to , its the good times that helps five us strength when we are weak and lying in bed feeling aimless and useless ( it works for me, sometimes)
Hi I am so sorry you are wheelchair bound. It must be terrible. I sometimes have to have one when we go away I cant walk very far and its easier for my husband and the friends we go away with. But when I do this I feel terrible as if I am letting them down. I still drive but when it comes to getting out of the car thats fun. I have to practically have to be lifted out but at least I can do it. I never go out alone mainly because I panic and have terrible fog when having to speak to anyone. Ofcourse most of my friends have gone and really I have only two left. And one treats me like an invalid I hate it and at one point told her not to come to my house, this lasted a year and then she crept back into my lift which to be honest I wanted her to. Cant win yet again. You are right about the good times but they are so few I sometimes think why is lift passing by. But never mind upwards and onwards. Doctors are on now what fun.
I write an ongoing journal , my thoughts'feelings; and experience as a sufferer who has cfs/me & fibro i post it on google+ you are very welcome to take a look and comment. I try to leave info as well as an honest account of my experience. I take terrible spasms now , all over my body so i could never drive if i wanted to the name of my blog is Diary of a cfs/me & fibromyalgia sufferer
i would give you my private email addi so we could write and keep in touch via email but i don't know how safe it would be .
i too have lost all my friends , my life is one of being practically housebound and isolated , i miss girly talk, i love make-up i used to always have my make-up on, my lashes and my nails done ....how life can change in the blink of an eye eh ...
I will look at your blog and thank you. You have definitely drawn the short straw with everything going on. It would be lovely to keep in touch. We could talk through the messages on this site. I know it is no exactly private but we have nothing to hide and would just be talking of every day things. I sometimes feel it is not worth trying to keep girly but I put makeup on every day no mater what. Lippy is a must no matter how bad I feel. Things have to have some normality. PLease try it it makes me feel better. I will send you a message hope you will reply. Take care. Please try the lippy
it'll be nice to keep in touch , i believe that we meet people for a reason , perhaps you are my inspiration ... I used to be on action for cfs/me i have made some friends through the site , and i regularly txt someone who has become a good friend . I think our illness brings us closer to those who also suffer for we have an infinity with each other and an understanding of what they are going through as well as them with us . My family just don't understand and i have near to no visitors so you are the nearest thing to my newest best friend lolgiggle , it will be good to chat when we can , i am also a good listener and i know only to well the ups and downs of this illness .
thanks for replying , i'll look forward to chatting more , enjoy your evening Ann
Hi Kira this illness is something that most people dont understand especially our family and friends. When I first got it my husband told me to shake myself and get on with it. At that time he worked away so did not see what I was going through being home sat and sun and most of the time getting ready to go back. Well he became ill and since then has had two major operations. But as he has had to give up work he has seen more and has become to realise what it is like t get through each day. I still get the feeling that sometimes he is thinking another complaint because as you well know each day brings another thing, I have a pain in my head which comes on every so often are maybe a silly pain like my ear and so on and on. At this time I think he is getting fed up of me. He says not and is very loveable but I cant get it out of my mind. They must get fed up with us as we get fed up with ourselves. Today I feel so tired and have got that flu feeling that we get I dont want to do anything but thats not unusual. Did nothing yesterday lol. I am really so happy to be able to talk to you it makes me feel as if I am not alone. Its strange how I put a question up and had the good fortune to have you reply. I live in Sheffield South Yorkshire and have four children. They are all grown up now and my youngest is about to move to St Helens to be a Staff Nurse. She has just qualified. I am really proud of her but dont want her to move away from me. I know its selfish but another year would have been nice while she takes her master. I have rattled on a bit but I am sure you understand. Thinking about going to sainsburys got a voucher 12 pound of a 60 pound shop. How exciting is life. Hee Hee. Hope you are ok. Going to patch up my face.
I don't feel good today either, i've been in bed most of today sleeping , i feel like i am coming down with yet another virus
I know what you mean about us moaning all the time, well feeling like we moan all the time......
I feel so guilty alot of the time even tho my husband says that i shouldn't . He's very good, gave up his work to become my full time carer he is a hatha yoga instructor , lived yoga and taught it for over 27yrs i felt that i had robbed him of something he loved for it wasn't just a job to him. I still feel like this even tho he tells me that he is now only doing another type of yoga ( looking after me)
I have 2 children Angela is 37 and Jamie is 41 , seems hard to believe that my kids are that age and yet i still feel and look as if i am only in my 40's myself . They don't really understand my illness, i hardly see them , esp Angela, she txts me but i would love for her to visit more often. i think she can't bare to see me ill like this and hides her head in the sand to it all. Jamie works til 8.30 every evening , when he's not working he lives and breathes his new girlfriend so i can't really moan at him about not visiting can i.
Its nice to know we can chat , its also good to know that we understand each other more simply because we are going through a similar thing .
take care of yourself , here is my email addi i'm thinking it'll be better to correspond privately
I too have a deep bone feeling pain, but it's not only in my legs but my toes, wrists & fingers, doctor says its fibro but I asked for a blood test to make sure it's not arthritis, yeah for once the doc was right.
I am so sick of doctors saying oh it's only your fibro go home & deal with it yourself!
I too get it when I'm really tired & need sleep, I also have codeine to take the edge off it, I just wish doctors were looking into fibro more.
Hi thank you for your reply. I went to my doctor with pain in my fingers thumbs and toes but I was told by my doc it was arthritis but there was nothing she could do. I was told I was taking enough pain killers and that was that. You are dead right about more research. America is dealing with this and have even done operations on the brain as it is said it is to do with the brain. We will just have to wait although I think iti is a bit drastic having your brain messed with. I think I would let a few people have it done before me to see if it worked but there again which is worse ? Food for thought. Well hope you day is going well and not too many aches.
Hi I think we all know what you mean. What helps seems to be different with a lot of us. Its finding a happy medium. My sister has brought me some Movalot cream. She swears by it and I am going to give it a good go. Hope you can find something that works. I am having a bad day today sat watching tele. Life just seems to slip away and each day is like the next.
I have been in alot of pain this last month withmy legs ankles and shins its been the worse pain ever ive got a doc appointment in 2 weeks and im going to tell him about it . I am on the max painkillers i can take 600 pregabline aday 30/500mg co codamol take 8 of them aday plus amitripyline40mg at night i put creams on my legs every night and im still in pain its bloody awful thats all i can say i thought it was me but now i know other fibromates are getting this pain too i will let you know what doc say to me ok xxxxxxxxxxxxxxxx
Hi thank you for your reply. Blimey you certainly are taking a lot of meds. I only take 450 pregab a day but have diyhrocodeine which does help but I wont take it on a regular basis because I think if I get used to it it wont work so well. May be mad but who knows. I am glad you are going to tell your doctor. Mine always puts it down to fibro and says I have arthritis in my hands. I try not to go to the docs very often because I dont want here to get fed up with me. What sort of cream do you put on your legs. I have algesal but my sister has brought me some movalot which she says is magic. I am going to try it tonight and see what happens. I will let you know,.
It will be very interesting to hear what your doctor comes up with you never know he or she might have some better knowledge. Hope your day is going well. Having a bad day so am sat in my chair watching tv and feeling sorry for myself.
I put radion B on them i got to say i have got a good gp who listens to what you got to say . Let me know how you get on with movalot cream my mom use to use that for her arthritis she said it was the only cream that worked but it was very expensive then which was years ago i was only saying to my partner last week about that cream my mom had if they still did it and if the doc would give it to me , lets hope it works for you and my be doc might give it to me xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi thank you for replying. I tried the movalat last night and I must admit I slept better not waking with the pain in my legs. Did four hours at one time. Anyway will let you know how I get on. You are right about it being expensive and if it does work I am going to try my doc to give it me. Not holding out much hope but who knows she might as she says the pain in my hands is artihritis and you mum did have it for that . Hope you are having a good day and you enjoy your evening.
Hi Annabell im so glad you had a better night sleep im having a better day i will ask my doc for some i thought my appointment was nxt week but its not till the 10th june i will let you know how i get on kep intouch . I hope you are having a better day mean has you had a good night sleep xxxxxxxxxxx take it easy xxx
Hi yes it seems to be working but I have to it on about every three hours. It smells a bit at first but goes off. I suppose I could easily use a tube in about 2 weeks so two a month might be a bit expensive from the docs. However, if it keeps working I certainly will try. God loves a tryer. Oh and my skin isnt peeling off thats got to be a bonus.
Hope your day had bee good and you are feeling reasonably ok.
Hi thank you for your reply its great to know how people cope with this pain. I also take dihydro and think its wonderful. But I try not to take it too much as I dont want to get used to i t. Sounds daft I know but I couldnt stand it if there was nothing to take it off. You are right about the heat I take a hot water bottle to bed all through the year come rain or shine couldn;t live without it. Hope your day is going ok and you are not feeling too bad.
This is to all that suffer with the lower legs pains. Get a deep footed massager with a heat controller setting on it. If you have heat/ swelling along with the pain, just use the coldest water without ice - yes, it really does shock you system at first but the relief is sooooo goooood within a few. Then put the massager on for about 10 minute spells. If no heat with the pain, then use mid warm water with the massager on.
Hi my husband bought me a massager about three years ago I used it once and put it behind a cupboard. Might be time to get it out. Dont know about the cold bit though but will give it a go. Many thanks
Hope your day is going well. I personally am having a bad week in the chair at the moment feeling sorry for myself. Just had a coffee with a brandy in it. Anything that helps I am for it.
Yes, me too- right inside the bones, not always the muscles. I haven't found a miracle cure, but I know it's worse when I have my legs angles downwards (like sitting in a chair) - because I think the cold from the floor seeps upwards? When I elevate them it IMPROVES (not cures) it. And I also warm them up- blankets, hot water bottles, everything I can to warm them. It helps, but that's about all.
Hi sorry for not replying before now and thank you for your help. I agree with you and I have a recliner chair its brilliant I also have a hot water bottle every night even in winter. Everyone says I am mad but its because they dont understand. Anyway its getting late so I better go to bed.
Hi Annabelle, I too have this and thought I have been going crazy with trying to find a cure. I use the gel but it only lasts a while. Have you ever tried gabapentin? they only last the prescribed time but you can keep yourself topped up. This is the best by far that I have found to help. Can I ask please (as you have given me hope), is it in your shin bones, as if it is deep inside and goes down to the top of your feet? Also, do they feel as though they could break at times? Thanks hunny, keep well. xx
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the name of my blog is Diary of a cfs/me & fibromyalgia sufferer 
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