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Fibromyalgia

edited 30 November -1 at 12:00AM in Disability Money Matters
2.7K replies 83.9K views
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  • 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!!
  • beekabeeka Forumite
    18 posts
    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! :rotfl:

    Ta for reading and feel free to ignore my ramblings if I'm too boring ;):D
    Get busy living, or get busy dying.

    - Andy Dufresne, The Shawshank Redemption
  • sharon59sharon59 Forumite
    1.1K posts
    tatty wrote: »
    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

    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.
    :j this money saving is such fun:T
  • 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 :D 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 :D

    Wishing you lots of "good half hours" also
    POLO
    :DPle'ma an bysva?:D
  • crutchescrutches Forumite
    1.1K posts
    thankyou all for making me feel less alone.
    x
    Every day above ground is a good one ;)
  • Important update! We have recently reviewed and updated our Forum Rules and FAQs. Please take the time to familiarise yourself with the latest version.
  • poohbear59poohbear59 Forumite
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    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.
    Grocery challenge £35/£200 business mortgage £13798))''(+ Barclay's business kitchen loan £7116=Total of £20914, 69% paid off was £68105 Weight to lose [STRIKE]42lbs[/STRIKE] 0 to go!! :D PPI claimed and received £13527 Save 12k in 2017no 116. £0/5000
    'I had a black dog, his name was depression".
  • jaywardjayward Forumite
    541 posts
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    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
  • poohbear59poohbear59 Forumite
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    jayward wrote: »

    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

    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.
    Grocery challenge £35/£200 business mortgage £13798))''(+ Barclay's business kitchen loan £7116=Total of £20914, 69% paid off was £68105 Weight to lose [STRIKE]42lbs[/STRIKE] 0 to go!! :D PPI claimed and received £13527 Save 12k in 2017no 116. £0/5000
    'I had a black dog, his name was depression".
  • POLO_BINTPOLO_BINT Forumite
    5.6K posts
    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 :D 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 :D

    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 :)
    :DPle'ma an bysva?:D
  • tattytatty Forumite
    28 posts
    Hi sharon59 ,The assembly went well in alot of of pain throughout but took painkillers and mam with me to look after my 1 year old, stood at the back so i could escape if needed after my son had done his bit ! My son is really good and understands how much pain i am in but i managed to stayed until the end and he was waiting when we came out to see if i was ok.My gp and physio think i have a slipped disc but the consultant is reluctant to commit to anything until he has the results of mri ,i had the mri last night and i was terrified have already had one so knew what to expect but they are still scary i have never been happier when she brought me out of the machine ,get the results on the 4th november so fingers crossed .thanks for asking how i got on with assembly its nice talking to other people who understand what you are going though my husband and family are really supportive but its good to read how other people manage with this fibro and realise you are not alone x
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