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  • FIRST POST
    Lindsey1948
    Fibromyalgia
    • #1
    • 22nd Oct 08, 3:21 AM
    Fibromyalgia 22nd Oct 08 at 3:21 AM
    Thought I would just introduce myself, I suffer from Fibromyalgia, and have just joined this forum. In 2007 I had cancer of the uterus and have successfully had it removed. I also have a walking disability caused by a fall in 1995. I also became diabetic last year. There has been a suggestion recently that FM/Thyroid problems (I have underactive thyroid)/Diabetes are all linked.

    But life is good , and although Im disabled, I worked full time until 2002, then took 18 months off whilst I learnt to live with the FM, and then did a year part time as administrator at a local youth centre, I liked it so much I have been a volunteer there 1 day a week ever since, keeps me young thinking!! I officially retired in April this year, and although I receive pension and pension credit + DLA and a small amount of company pension, there are days when finances are tight. I lose most of my DLA to the motability people so that I can feel safe in an up to date car that I know wont cost me money to insure/tax or repair/service. (I keep the low rate care).
    Just wanted to know if there was anyone else on here with FM, and any ideas for coping stategy's regarding energy levels/pain management etc.
Page 3
    • 281273
    • By 281273 23rd Oct 08, 7:52 AM
    • 145 Posts
    • 256 Thanks
    281273
    I have to admit my Doctor is FAB!!!. He has done courses on fibro so understands the syndrome very well. If he hadnt understood i wouldnt have been diagnosed yet even though 10 years ago i took i newspaper clipping to my old doctor about fibro and said is this what i have. When i was 17 a consultant told me and my mum that the pain was in my head. She believed him for 5 years, strangly until i gave birth to my son at 22. She was amazed about the lack of pain relief i had and then realised for me to say i was pain then i must be in pain. To have my mum not believe me was hard. One great thing about pregnancy is that my symptoms just disappeared. It was great. I have 3 children and it happened on all three occasions. However a few weeks after birth symptoms do come back with a bang. Also I had a major op in July and at the end of September the symptoms were the most severesti have ever had. My neuropsychologist says this is normal.
    Sealed Pot Challenge - No 1520
    Want to be debt clear by June 2012
  • SteveCat
    Hi Steve, I get pain around my rib cage, I get pressure points there, can feel the tough muscle in spasm with my fingers/hand (physio showed me how). From what you describe though, if it's your Right side, and when in your back the pain seems under your shoulder blade, it could be gallstones. Obviously no-one can diagnose online, but have you been to your GP about this? (I have gallstones myself)
    Originally posted by welshbit
    Hi there, thanks for that. Its not really any side as such but all over, its hard to describe the pain however at first I thought it was something to do with stopping smoking but the pain itself feels just like the pain associated with Fibromyalgia. Sharp and sometimes intense, also like FM it moves around and never seems to be in one place at a time.
    • septemberblues
    • By septemberblues 23rd Oct 08, 10:37 AM
    • 825 Posts
    • 3,456 Thanks
    septemberblues
    Hi I have fibro too (as well as other things - we don't seem to get fibro on its own!). Most people have not heard of this illness, and yet there are a lot of sufferers. As you all know, it's difficult having an illness no one has heard of, and getting IB or DLA for fibro is hard going. I get IB and DLA - but not for fibro - which is what I would consider my "main" condition. :rolleyes:

    Anyway, nice to meet you all. Keep taking the tablets
    KEEP CALM AND keep taking the tablets
  • philnicandamy
    Snap..fibro sufferer for over 20yrs now & its true you always seem to get a ton of other things to weigh you down if FMS wasnt' enough on its own! I suffer with osteo arthritis & mental health problems as well on top of all, i've been on incapacity benefit nearly 2yrs now since finishing work due to my condition getting worse (and had a car accident that also crushed a disc in my back affecting my neck/shoulders & poor grip in my hands) dont know where i'b be if I didnt have my motability car for sure.....one thing I dont like though? medication! i've never taken so many tablets in my life! one tab for this one for the side effects etc never been to so many self help / CBT/ Councelling / Pain management clinics sadly none of any benefit to me....although since I changed my GP she's been brillilant & started me on better tabs to help control the pain...

    All in all?? one day at a time works for me!......and i'm only 38!!

    Phil
    • poohbear59
    • By poohbear59 23rd Oct 08, 12:38 PM
    • 4,820 Posts
    • 55,754 Thanks
    poohbear59
    Hi All
    Anyone tried the epileptic drug - gabapentin I have heard it is really good for fms.

    try to keep positive,
    Originally posted by yellowrock
    Hi, I take gabapentin and it has really helped me a lot. I still get flare ups though. I decided it wasn't working and gradually came off it but my pain got worse so I am back on it. It does seem to help but my GP said that it had to be recomended by a specialist. I have seen two rheumatologists, one of whom specialise in FM.

    I was really intersted in what you have said about low blood sugar. I have the same thing and after seeing numerous doctors have been told to eat six small meals a day.

    I passed out in Debenhams, recently, due to blood sugar problems. Very embarassing!! I hadn't eaten all day as I was busy and forgot and I hadn't been out to a big store for about two years. I had lunch in Debenhams and then about 5 minutes later passed out in the bra department . Apparently its called 'dumping'.

    I blame the forgetting to eat on 'fibrofog'.
    • septemberblues
    • By septemberblues 23rd Oct 08, 2:55 PM
    • 825 Posts
    • 3,456 Thanks
    septemberblues
    Wow, I never, ever forget to eat!! I'm on Amitriptyline, I've got an appetite like a horse .
    KEEP CALM AND keep taking the tablets
  • Wazz42
    Hi, I too have fibro. I was fine until 2002 when I had 'sudden onset' rheumatoid arthritis. I was a teacher of a very active class of 9-10 yr olds. That was in feb half term. By Easter I had 2 weeks off in addition to the holidays to get my head round the whole thing and solve the pain issues, and never went back!

    I've got raynauds syndrome (cold, white then red fingers, toes,nose and ear tips)
    sjogrens syndrome
    fibro

    I've recently come to the decision that although I didn't ask for this and it's not my fault, I still have to deal with it day to day and with regard to my mental state too. Since having a ltc I've put on a lot of weight, and been angry and frustrated and couldn't do anything about it. I've now decided that yes it's going to be difficult, no it's not my fault but it's still up to me to tackle it. I've started off by aiming not to put on any more weight this year, so far on track. I'm now trying to do similar with exercise, seeing a physio for help.

    I have a lovely GP, I too have worked out my dose for amitryptylene, and for tramodol (pain) and have a 'normal dose' and a higher one for when I know I'm going to be pushing it (when I had to get my Dad to hosp in Liverpool for a heart op) so I could do what I had to (not driving lol!) I also take anti inflams and really do work hard to keep positive. The thing that is hard is the fibrofog and the sort of mental mush I seem towade through sometimes, repeating what someone just said to try and work out the reply!

    Take care
    xx
  • tightperson
    Hi, I too have fibro. I was fine until 2002 when I had 'sudden onset' rheumatoid arthritis. I was a teacher of a very active class of 9-10 yr olds. That was in feb half term. By Easter I had 2 weeks off in addition to the holidays to get my head round the whole thing and solve the pain issues, and never went back!

    I've got raynauds syndrome (cold, white then red fingers, toes,nose and ear tips)
    sjogrens syndrome
    fibro

    I've recently come to the decision that although I didn't ask for this and it's not my fault, I still have to deal with it day to day and with regard to my mental state too. Since having a ltc I've put on a lot of weight, and been angry and frustrated and couldn't do anything about it. I've now decided that yes it's going to be difficult, no it's not my fault but it's still up to me to tackle it. I've started off by aiming not to put on any more weight this year, so far on track. I'm now trying to do similar with exercise, seeing a physio for help.

    I have a lovely GP, I too have worked out my dose for amitryptylene, and for tramodol (pain) and have a 'normal dose' and a higher one for when I know I'm going to be pushing it (when I had to get my Dad to hosp in Liverpool for a heart op) so I could do what I had to (not driving lol!) I also take anti inflams and really do work hard to keep positive. The thing that is hard is the fibrofog and the sort of mental mush I seem towade through sometimes, repeating what someone just said to try and work out the reply!

    Take care
    xx
    Originally posted by Wazz42
    Hi Wazz, I was on tramadol, then dihydrocodeine, then back to tramadol but neither one suited me. I found that I was taking the max dose every day and was still in too much pain, totally spaced out, unable to function, and dangerous driving so I couldn't. For the last 6 months I have been on Buprenorphine which are very strong but I don't get any side effects from them, they are the best painkiller I have tried yet.
  • tatty
    Hi i suffer from fibro too !!
    Hi i was diagnosed in 2002 ,from being quite healthy and working as a senior nursery nurse to a complete wreck .i have IBS, raynaulds disease and have had many visits to physio more in the past 10 weeks as i have got horrific pain which is different than normal in back which also radiates down leg i saw a consultant (about 4 or 5th one )on tues and have to have another mri tomorrow which i am dreading as i panic and end up with palpitations .Its so hard to have a 'normal ' life i have a 7yr old and a 1yr old and have to rely on my mam during the day and my husband when he comes in from work .I am only 33yrs old and feel like the fibro has once again overtaken my life and i have lost control of it .My son has his harvest festival assembley tomorrow morning and im terrified i wont be able to stay and watch it all as the pain will take over but i will keep on fighting this no matter how much it gets me down .good luck to everyone who has this horrible fibro take care claire x x
  • emilyt
    This poem was sent to me. Hope you don't mind me sharing.

    'Ode to FibroFog'

    Just a note to say Iím still living
    That Iím not among the dead
    Though Iím getting more forgetful
    And mixed up in the head.

    I've got used to being tired
    I get it all the time
    I can manage my frustration
    But, Oh God, I miss my mind.

    For sometimes I canít remember
    When I stand at the foot of the stairs
    If I must go up for something
    Or have I just come down from there.

    And before the fridge so often
    My poor mindís filled with doubt
    I have just put food away
    Or have I come to take it out.

    And there are many times when itís dark
    With my night-cap on my head
    I donít know if Iím retiring
    Or just getting out of bed.

    So, if itís my turn to write to you
    Thereís no need for getting sore
    I may think that I have written
    And donít want to be a bore.

    So, remember Iím always thinking of you
    And wish that you lived near
    But its nearly mail time
    So, I must say goodbye my dear.

    There I stand before the mail box
    With my face so very red
    Instead of mailing my letter to you
    I opened it instead......
    When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile
  • SteveCat
    This poem was sent to me. Hope you don't mind me sharing.

    'Ode to FibroFog'

    Just a note to say Iím still living
    That Iím not among the dead
    Though Iím getting more forgetful
    And mixed up in the head.

    I've got used to being tired
    I get it all the time
    I can manage my frustration
    But, Oh God, I miss my mind.

    For sometimes I canít remember
    When I stand at the foot of the stairs
    If I must go up for something
    Or have I just come down from there.

    And before the fridge so often
    My poor mindís filled with doubt
    I have just put food away
    Or have I come to take it out.

    And there are many times when itís dark
    With my night-cap on my head
    I donít know if Iím retiring
    Or just getting out of bed.

    So, if itís my turn to write to you
    Thereís no need for getting sore
    I may think that I have written
    And donít want to be a bore.

    So, remember Iím always thinking of you
    And wish that you lived near
    But its nearly mail time
    So, I must say goodbye my dear.

    There I stand before the mail box
    With my face so very red
    Instead of mailing my letter to you
    I opened it instead......
    Originally posted by emilyt
    I don't know where you got that from but God it is spot on
  • YorkiePud
    Good Morning fellow faaaabulous people ... !!

    Can I just say, cos FMS can be an umbrella name for hundreds of different symptoms, don't always assume a new pain or symptom IS the FMS, so get it checked out!

    My doctor would probably see me with my arm hanging off and put it down to FMS!! You get to know what feels like FMS and what feels new and a sudden development, so please, if in doubt, get to the doctor and actually say, "This is NOT my FMS and needs checking, please!"

    It's the easiest thing in the world for you and your doc to put it down to FMS and with there being so many symptoms, then maybe 8 out of 10 times it could be that, but do check and don't just assume it's that!

    Also, not to worry anyone unduly, but you folks taking tramadol .. you don't get all shaky and iffy when it comes time to take it, do you? If you're late taking it, you don't get really ill and almost "crave" it?

    Reason I ask is because I took tramadol for about 4 years, and then I got very scared because I felt like a druggy ... if I went half an hour over the time to take it, I was in a real state and felt fine once taking it.
    Yes, it is amazing pain relief, but it turns out the damn thing is highly addictive and there are even clinics in the States for people to get off this damn drug!!
    It is an opiate but even at lower doses it can eventually have you in the state I was in!!

    My doctor absolutely refuted it could possibly be that, so I endured one week of absolute hell where I stopped taking it and all the craving feelings went away (yes, I couldn't get out of bed, but it proved it was the tramadol!) ... my head was a bit clearer and I didn't feel "low" ...

    Apparently they are trying to get it banned in the States, so if you have any of those feelings, please mention it to your doctor because it might just be that. It might not of course, and you might be fine with it (I usually get all the good side effects ha ha ha!), but I just wanted to mention it cos we have enough to deal with without side effects like that!!

    I take a muscle relaxant called Methocarbamol (Robaxin-750) ... 6 tablets a day, and then I take Tylex 6 tablets a day and I have found they have more than made up for the tramadol so if anyone is in any doubt, please query the doctor!! I went on for a good few months like that before having the guts to, and like I say, had to take matters into my own hands to prove to her it WAS the tramadol doing that to me!!

    And to end on a good note ... I had to laugh about taking something to sit on!! I get a lot of "pain in the butt" too ... I must try it!! *LOL*

    Well, another day ... have just got mobile so will go do what I can. Have fun and try to keep smiling!!
  • beeka
    Hello again everyone, just wanted to tell you how much of a positive difference this thread and board have made for me already - I don't usually like to join forums that are 'just' about fibro as it kind of makes me feel that that's all there is if you see what I mean? I've appreciated this because it's a part of MSE so it's not a 'special' thing, it's just part of my life, and I can share with you all - I'm not making clear sense I don't think... suffice to say that it's nice not to be isolated whilst not being all about the fibro and nothing else.
    Plus, can't remember who posted the spoons theory link, but that has to be the most helpful thing I've ever come across!!! I'm gonna send it to all my family and friends because they have a really hard time understanding it all I think, and I can understand that, but that theory expresses it beautifully!

    I'm recognising a lot of drugs being listed - I've used the whole spectrum, except the anti-inflams/NSAID type drugs as I can't take those. I'm allergic to so many but am currently on liquid amitryptiline (sp?) 30ml (150mg) - I was on 175mg but am trying to wean myself off them - I don't want to live my life on drugs, and since I'm only 30 I've got some way to go (I hope!) and so don't want to be dependent in such a way. I find TENS, heat and rest are all helpful in taking the edge off but have kind of accepted that I'm going to be tired and in pain everyday. I just get on and try to keep to the pacing as much as possible so I don't overdo it.

    Anyway, sorry, rambling on, the question I really wanted to ask is of those of us on amitryptiline - have you found you've gained weight or have a swollen tummy? I had my gallbladder taken out last year and then managed to put some weight on which I needed to as I was too skinny. However, I now have a very swollen tummy and my face is very round (and I heard that some heavy drugs can make that happen) and I was just wondering if anyone else had experienced the same and whether it's likely to be the drug or not - I'm not fat but I can't get my tummy to deflate!

    Ta for reading and feel free to ignore my ramblings if I'm too boring
  • sharon59
    how did assembly go tatty
    Hi i was diagnosed in 2002 ,from being quite healthy and working as a senior nursery nurse to a complete wreck .i have IBS, raynaulds disease and have had many visits to physio more in the past 10 weeks as i have got horrific pain which is different than normal in back which also radiates down leg i saw a consultant (about 4 or 5th one )on tues and have to have another mri tomorrow which i am dreading as i panic and end up with palpitations .Its so hard to have a 'normal ' life i have a 7yr old and a 1yr old and have to rely on my mam during the day and my husband when he comes in from work .I am only 33yrs old and feel like the fibro has once again overtaken my life and i have lost control of it .My son has his harvest festival assembley tomorrow morning and im terrified i wont be able to stay and watch it all as the pain will take over but i will keep on fighting this no matter how much it gets me down .good luck to everyone who has this horrible fibro take care claire x x
    Originally posted by tatty
    was hoping you enjoyed the Harvest assembly and managed to last thru it.
    I have fibro etc etc but also have a prolapsed disc in my back and this gives me excruciating pain shooting down the leg and into my knee or calf-this is caused by the sciatic nerve getting squished by the disc.Does sound a bit similar and unconnected to the fibro.I had an MRI scan that showed the disc prolapse-ordinary xrays dont.please pm me if can be any help.try not to worry too much.
    this money saving is such fun
    • POLO_BINT
    • By POLO_BINT 25th Oct 08, 1:13 AM
    • 5,563 Posts
    • 31,339 Thanks
    POLO_BINT
    Hi guys,

    I have been reading this thread now for some days and have been touched by each of your posts.

    YorkiePud - I really appreciated your first post, I sat here crying too! And I have just shown my partner what you wrote, I had to show him that there was someone else out there who feels EXACTLY how I feel! You write exceptionally well, and I connected with every last word you wrote! Thank you!

    I too, have many other "ailments"! I have had several reconstruction hip operations which have resulted in staying in bed on my fat !!!! for months at a time after each one. I was told that my Fibromyalgia may have come about due to the trauma of all the surgery I have had done. But I am convinced that all my aches and pains started after having a herniated disc in my back. It is intresting to read of others who have Fibro, also have back problems of sorts too.

    It all start with the tops of my fingers aching, then progressed to my finger joints, knuckles and wrists. I could'nt even rest my wrists on a table, nor my elbows - they were so sore from the slightest of touches. And if I knocked my wrist or banged my elbow I would be screaming in agony too!

    Many things continued "to go wrong".... nerve problems in my arms - odd sensations in my shoulder. chest aches..... ribs aching......... hips already ache due to being born with a congenital hip problem.... arthritis...... legs hurting, hot to touch!

    Restless nights! Tossing and turning! I was so bad and thought noone believed me!

    Ws such a struggle to wake up, I hated it! Waking up to a pounding headache, unable to even find the strength to move a muscle in order to get up and see to my little girl. My hands would hurt so much! Always feeling so fragile, just trying to grasp the duvet and pull it up over me felt like my hands were going to break!
    I couldn't urn on a tap, flush the loo, unscrew a lid of a bottle, turn a door key!!!!!! I did not know what the hell was happening to my body! All I did was sleep! 22 hours a day! (I would have slept the other 2 hours if I could) but with a little girl to look after I had to be there or her.

    I would type a letter, and go to read it back and it ws all gobble-de-gook! My head and hands just wouldnt work together! I could not think straight, all I did was cry and wimper with pain 24/7!

    That was 2 years ago now, my worst time, I could never forget the pain I felt back then, I lived on Oramorph to ease the pain of it all and also the pain from hip operations. But it just made me sleep!

    I tried every tablet under the sun, all different variations!
    Gabipentine, tramadol, fentynol, slow realease morphine tablets, voltoral, diclofenic, amatriptlyne .. god! The list goes on!

    None seemed to work, the liquid morphine made things easier as all I did was sleep!
    Tramadol was awful! As good as it was for the initial week or to, I started having muscle spasms, so bad my arm would just jolt right out infront of me, I started having fits!!!

    More consultants..... neurosurgeons..... rhumy's....... it seemed like years of hospital visits and still I was none-the-wiser as to what was causing all my pain.

    The rhuemtologist I saw was fabulous, he asked me questions like he just knew what my responses would be!

    He diagnosed Fibromyalgia and also posible Lupus, which I have blood tests for every 3 months.

    I have a problem with "Smooth Muscle Antibodies"???? amoung other things lol, my rhuemotologist said that this pointed to me having an autoimmune liver disease... so off I trotted to see the liver specialist.... he said everything points to a problem with my liver, but after a biopsy he said my liver is perfectly normal! So, more tests which have come back abnormal ... still unsure what it could be! I was told it is very hard to diagnose Lupus, as there is not one single test for it, this is why they take my bloods every 3 months. They also tell me that Fibromyalgia sometimes run hand in hand with Lupus? I would be interested to know if anyone else has Lupus? Or even back problems which may have resulted in getting Fibromyalgia!

    I wish I could do more. I feel guitly always feeling ill. My boyfriend tells me that he understands but I cant help but think he thinks I am laying it on thick because I cant be arsed to make a cuppa, or take the bins out etc etc. Truth is, I would give anything to be able to do all these little things!

    I miss being able to give my little girl a really big squeeze without feeling pain all over my body! I would love for her to jump up and hug me without telling her to be careful as mummy is in pain! It is heartbreaking, and I am so grateful my little girl is so patient and loving.

    Now I have written my war and peace epic, I am gonna go and rest my weary wrists.... give my boyfriend and nudge to make me a brew.... and look forward to reading more from you all over the next few days, weeks and months.

    Oh.... before I go, I'm Emma I'm 27yrs old from Cornwall, and regardless of all my aches, pains, biatching, moaning and whatever else I may do.... I am always about if anyone should wish to drop me a message

    Wishing you lots of "good half hours" also
    POLO
    Ple'ma an bysva?
  • crutches
    thankyou all for making me feel less alone.
    x
    Every day above ground is a good one
    • poohbear59
    • By poohbear59 25th Oct 08, 3:14 PM
    • 4,820 Posts
    • 55,754 Thanks
    poohbear59
    Thanks for the info on Tramadol Yorkiepud. I take it if nothing else helps and it just makes me sleep. I didn't know how addictive it can become. Luckily I still only take about two a month, but I will takecare as I was thinking of asking GP to prescribe me more.

    POLO Well done on keeping positive, it must be really hard work with a toddler to look after. I looked afetr my neighbours three year old for two hours and I could do nothing else that day!

    beeka I gained two stones in weight after starting on the Amitriptyline, but the worst one was the Zispin my GP put me on thinking it was 'all in my head' and I was just depressed. It almost guarantees weight gain. It also made me turn into a monster, even to the point of trying to kill myself. I don't know if anyone else has found that some drugs do exactly the opposite to what they are designed to do when you take them.

    I gained two stone on the zispin too so I had 4 stone to lose after being a person who didn't ever put on an ounce and ate like a horse.
    • jayward
    • By jayward 25th Oct 08, 3:35 PM
    • 541 Posts
    • 7,297 Thanks
    jayward
    hi ,i wanted to say hello
    YorkiePud yes i feel now that every thing is the fibro as you said do the drs ever listen

    i was diagnosed in may i am struggling with it ,I'm not sure its what i have or i am not excepting it .i can put a lot of the pain down to the other medical conditions i have

    the Rheumatologist confirmed it but i had pain in my neck insisted on a MRI scan which showed nerve compromise

    i have had abdo pain problems for several years, i have mild Crohns,with ibs
    and recurrent abdo pain which is not ibs but they have not found a cause and i have several admissions to hospital a year

    Plantar Fasciitis and severe pain in my feet i have had for 2 years which means i have lost my job i worked for nhs but no pension i have always worked and i feel guilty and lost
    but also have a prolapsed disc in my back and the degenerative disk disease in my neck
    i am waiting to see a neurosurgeon for my neck, and psychologist for the pain

    i go to pain clinic and i seem to react to all the meds so dizzy or sleepy i cant go out,or abdo problems so all i have is paracetamol and now im not working codine at night and that just does not help i hate the druged up feeling so its that or pain. is any one else like this

    i am trying gabapentin and no pain relief as yet but i am so sensitive i am only on small dose but i am sleepy but more relaxed

    I'm lucky i get incapacity benefit which runs till Feb but what happens then ? and dla
    and pathways to work keeps ringing and that does not help even before i lost my job because i was on incapacity benefit , i would love to go to work but i cant
    Last edited by jayward; 25-10-2008 at 4:01 PM.
    • poohbear59
    • By poohbear59 25th Oct 08, 3:49 PM
    • 4,820 Posts
    • 55,754 Thanks
    poohbear59

    i go to pain clinic and i seem to react to all the meds so dizzy or sleepy i cant go out,or abdo problems so all i have is paracetamol and now im not working codine at night and that just does not help i hate the druged up feeling so its that or pain. is any one else like this

    i am trying gabapentin and no pain relief as yet but i am so sensitive i am only on small dose but i am sleepy but more relaxed

    I'm lucky i get incapacity benefit which runs till Feb but what happens then ? and dla
    Originally posted by jayward
    I agree about the choice we have to make, either drugged so can't function properly or take paracetamol and deal with the pain and can't function properly. It is a catch 22, situation.

    When the incapacity benefit is near to running out they will send you a booklet to complete about your health. It is a huge amount to complete so maybe you should ask for help from a disability organisation. We have a group caled DACE near here who are fantastic at helping with form filling.
    • POLO_BINT
    • By POLO_BINT 25th Oct 08, 4:34 PM
    • 5,563 Posts
    • 31,339 Thanks
    POLO_BINT
    I have never been able to work at all! I left school and went on to college, I would give anything to be able to have a full time job!!!

    I was born with my hip condition but it was not found by the doctors until I was 15 years old, since then it has been a whirlwind of operations and appointments!

    I feel guilty too, for not working. I feel guilty not being able to do the things with my daughter that other mummy's and daddy's can do. I feel guilty for turning to my partner or little girl and saying "mummy needs to rest".

    I am lucky to have a great relationship with her father, we split up when she was just 9 months old, but we are still best of mates now! He helps out by taking her when I need to get up to Bristol for appointments and surgery.

    My rock, has been my current partner. He is a policeman and works odd shifts, but he always goes out of his way to make sure life is less stressful for both myself and my daughter! I spent years being single wondering if there was anyone out there for me who would understand. I truly believed no-one would ever want me "like this". He is an absolute diamond! And he never EVER moans!!!!

    I've had a really good day today, after having a few bad nights! I'm going to go for a rest shortly to recharge my batteries As if I don't I will suffer later on this evening!

    It is all about "pacing yourself". I know if I over-do certain things then I will be in agony for days afterwards. I am due to go out for the night next weekend for a mates birthday, so will be taking it easy all week, just to ensure that I will be able to have a good Saturday night out! I am really looking forward to it, as I always have one vodka too many which makes me sleep like a baby!!! But... I always have a few drinks then dance my little socks off the rest of the night, regardless of the pain I may be in! I love it! What I don't like is it takes me over a week to get back to "normal" again!

    I am due to be called in for another major hip operation anytime within the next 10 weeks, so I am making it my mission to get out and about as much as possible before then as I will be bed-bound for 3 months after the operations.

    I live in the sticks so to speak, my local hospital is in the next county!!! Almost 30 miles away! So I gave up on going to the Pain Clinics there, and also using the Hydrotherapy pool there too merely because it was a full day out just for a 30 minute appointment! It made me worse!!!!

    I only take tablets now when I am in extreme pain. I hate to think what I have pumped in my body these past 13 years!

    My little girl is not so little anymore either! She is 7 years old! My worse pain was when she was 4 years old. Like I said before, she is a really good girl and I am blessed, but still I would love to do a whole lot more with her!

    PoohBear - It is so very hard trying to keep a positive attitude towards it all, I do very well most days, but then I will have a few weeks of feeling so low, useless and like my life is utter sh!te! If I am honest, I am one of these that know what I should be doing, but never practice what I preach!!! hehehehe

    I am extremely stubborn also! I think thats all down to the fact I get embarressed constantly asking people if they can help, so I soldier on through and deal with a lot of things on my own, desperately wanting help, making myself extremely tired, til I am burnt out! I know if I start something, I have to make sure I finish it right away without slowing down or stopping for a rest, because I know if I stop for just 1 minute I will be too sore to get back up and finish things off!!!!

    It is a bloody nightmare living with Fibromyalgia !!!! And it's tiring in itself! You always dream of having just one day which is "pain free"... but it never comes, you wonder if "it's all worth it"..... "when will the pain end"..... but it doesn't end! You "live" life noticing every single pain, having to plan your days way in advance! All this is extremely physically and mentally draining, but still you battle on!

    The only thing with have in live is "HOPE", and I hope each and everyone of you have had a "better" day today
    Last edited by POLO_BINT; 25-10-2008 at 4:41 PM.
    Ple'ma an bysva?
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