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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 4
  • tatty
    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
    • POLO_BINT
    • By POLO_BINT 25th Oct 08, 4:57 PM
    • 5,563 Posts
    • 31,339 Thanks
    POLO_BINT
    Glad to hear the Harvest Festival went well, Tatty.

    MRI's are scary at times! Especially when they need to you remain so still and its almost impossible laying there in so much pain without wanting to move!!!

    Will be keeping my fingers crossed for you for your results on the 4th also - you will have to let us all know how you get on.
    Ple'ma an bysva?
  • tatty
    thanks
    Hi thanks for your reply i must have cried for an hour before going and i had a 6pm appointment so my husband could take me after work so i worried all day it was really scary and the pain in my back awful but the thought of pressing the panic button and having to do it all over again was the only thing that got me through it i think .I will let you know how i get on with my results take care x
    • nearlyrich
    • By nearlyrich 25th Oct 08, 6:54 PM
    • 13,335 Posts
    • 16,542 Thanks
    nearlyrich
    I have FMS too was diagnosed in 2005 after a bad patch where I had flu like symptoms then pains everywhere for weeks. I still work but like another poster I work mainly from home so I can manage my work around the bad days.

    I know I am lucky to be as well as I am most of the time, the insomnia is probably the worst bit for me.
    Last edited by nearlyrich; 25-10-2008 at 6:56 PM.
    Free impartial debt advice from: National Debtline or Stepchange[/CENTER]
  • sad dog lady
    me too, i have fibro and im just returning to work.... how many people here have had a complex diagnossis??..... i was diagnosed at 18 with m.e.
    then at 29 m.s. was suspected.... then they said it was some neurological disorder... now they say its fibro myalgia.... im 37 lol
    perculiar or what? im returning for just 5 hours a week, i hope to gradually be able to take on more but also care for both my autistic sons.
  • beeka
    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.
    Originally posted by poohbear59
    Wow... just shows how much a gp can harm you by not taking you seriously.
    Thanks for sharing, it's been something that has really bugged me for a while, partly because I was anorexic for about 20 years and only really 'recovered' from that about 5 years ago, so I'm sure you can imagine that this leap in weight was a bit tough for me to deal with. :rolleyes: Anyway, I'm kind of ok with it for the moment, although it is difficult sometimes as the swelling in my tummy is disproportionate to my overall body measurements, but I am hoping that maybe coming off the meds gradually will help a bit as well as trying to eat more of the healthier stuff!
    (oops sorry bit of a hijack!)
    • nearlyrich
    • By nearlyrich 26th Oct 08, 9:39 AM
    • 13,335 Posts
    • 16,542 Thanks
    nearlyrich
    I was given Amytriptelyne (sp) but I felt like I wasn't me, can't explain it just felt so weird so I went back to the doctor and told him I wasn't taking any more. I can't shift a couple of stones however hard I try so I put it down to my dodgy metabolism and stopped worrying about it.
    Free impartial debt advice from: National Debtline or Stepchange[/CENTER]
  • raeh
    I have lurked on mse for years reading but had to sign up today just to post in this thread. Yorkiepud you said everything i feel its amazing how many people feel just the way i feel. I keep correcting my typing like someone else said as i miss out letters but sometimes i just 'lose' what i was typing and have to stop and think... the fibrofog as i have just read about, im like that in conversations sometimes i just lose what i was saying and im sure people think im drunk lol. My memory is absolutely awful, i just cant remember the word for things.
    I was diagnosed about 9 years ago after years of pain that was always explained as 'some sort of arthritis' until i got a new gp who took one look and gave me a leaflet to read which was like reading about myself! I have the raynauds too and quite severe IBS but im also going to ask about a thyroid test after reading about other people as thats something that has never been checked and maybe that may have something to do with my terrible exhaustion every day.
    I agree with the person who spoke about other people attitudes, im not old.. i dont 'look ill' so noone sees the pain do they? I get tired of the people that smirk when i say i CANT do something, they just dont understand its impossible for me. My husband and kids have adapted to the fact that i just cant join in doing some things but theres lots we still can do together. My arms are the worst for me and im very clumsy holding things and sometimes things just fall from my hands [im well known for being accident prone at work lol]
    I have tried amytriptylene and it cured the pain fine but i walked around in a daze constantly and i felt that i wasnt quite there? The gabapentin did the same, i was dizzy and couldnt drive or work as i wasnt focussed enough so for me i just take lots of paracetamol and pace myself taking rest when its needed and not doing things i know will hurt me. This doesnt work for anyone but it has given me a life back. I now work again after a few years off, just mornings as a teaching assistant but that gives me the afternoon to recover before my own kids are back from school. I only manage that due to now having the motability car as before i wouldnt have managed the getting to work and back, Im not able to claim any care component of the DLA so i would be interested in how people claim that but im greatful of the mobility part.
    Sorry for such a long first post but it has been theraputic lol to say all this.
  • debt4evernot
    Can't believe I have found this thread!!! Also sat with tears. I too have FMS. I also have arthritis, hypermobility syndrome, Raynaud's, slipped disc, cervical spondylosis, costochondritis - well it just goes on. Everytime I injure myself it takes forever. The medication I have tried is endless. I work full time in the NHS. I was actually signed on the sick for 3 weeks by the physio dept and came back to work without my line manager and her manager making any reasonable adjustments! No-one listens. I am still waiting for the back care team to come out and assess me - but in the past they haven't listened!! My workload has doubled and I have just been told last week that I will have a further increase and the solution - overtime!!!!!!

    My husband is great but everyday is a complete struggle. I don't sleep well but every day I wake up just hoping that 'today will be the day I don't feel exhausted and in so much pain'. It is the constant nagging pain day in, day out. Most of my colleagues don't believe me - some do and they are brilliant.

    The one thing I do regret is that we got ourselves into a financial 'mess' and I now need to work.

    I have tried everything under the sun - a small dose of Amitryptyline does work to a certain extent apart from the fact that I feel as if I have a hangover. When my rib pain starts it feels like a broken rib(which I have done several times) and if I get to see the wrong GP he then thinks it's a clot and sends me off to the hospital!!!!! I take painkillers every single day - all day - first thing on a morning!!! (almost like having a cigarette I would imagine).

    I keep having bloods taken and my thyroid reading is at the lowest end of the normal range. However there are some GP's that believe if that's the case you should be started on treatment but apparently the path labs won't check any further if the original test is within the normal range. They also check me regularly for lupus and rheumatoid arthritis but so far the readings keep going up/or down but still within the normal ranges!!!!

    Just so pleased I found this thread. One thing I did come across is an American Fibro site and they suggested asking friends/family members to place clothes pegs on their fingers - that is the pain we feel all the time!!!! They actually produced a small badge in the shape of a clothes peg.

    Just thanks everyone and here's to us!!!!
  • Careful with that Axe
    Hello all.
    I don't have Fibro (well, that's been diagnosed anyway!), but have Lupus, MCTD, Lupus and T-Cell Lymphoma.
    I understand the suffering you all have as my pain seems very similar to Fibro.
    Can I be an honorary member of the group please?
    just read about the weight gain with Amytriptiline - great news on top of my Steroid induced hunger! Have just started taking Amy for muscle spasms and headaches (not yer run of the mills - really crippling).
    also have a stock of Tramadol, Co-Codamol, Co-Dydromol, diclofenac and Paracetamol. the only thing I found really effective was Co-Praximol and they took the damn thing off the market! :rolleyes:
    I was convinced the "mind fog" was just me, so am slightly comforted by the fact that it isn't iykwim.
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
  • littlemissmanics
    another fibro, diagnosed about 7 years. Its nice to find a board where everyone is just matter of fact about it...i've found numerous forums where people seem to be almost competing about who has the highest amount of pain. Its insane. It takes too much energy just to actually write something that makes some kind of sense in any post!

    Been stuck in a flare up now for over 2 years, with periods where it gets worse, and then occasionaly better but it seems a long long time since i working and at uni. 24 yrs old and a cup of tea without arm spasms makes for a wonderful saturday nowadays!

    I'm kind of lucky in a way because i gradually got worse and worse whilst i was working (i was a bar manager) so pretty much everyone i know saw a gradual decline so i dont get so many of the 'skiver' comments that i know some others do. It also means that they all look after me when i do manage to get out for a few hours. Having people argue over who's going to give up their chair for you is actually quite nice!

    I'm also lucky cos my boss at the pub is happy to let me come back and do a single 2 hour shift in 4 weeks whenever i feel upto without getting frustated at the lack of progress.

    With regards to medication have tried everything they could throw at me, and have finally found something that at least maintains the pain at a manageable level- Robaxin!

    I'm along way from pain free, but at least i have a rough idea of how many i need to be able to cope with the pain each day, and being a muscle relaxant, it does help to control the muscle spasms which used to be the worst part for me.

    Have written far too much there, so sorry. Hope everyone is having a not-too painful day.

  • gipsie
    I have FMS also
    I have FMS , there are lots of support groups that you can join . I do run one myself ,Ii will put the link on here for you , not sure if I am allowed but they can always delete this post. My group is http://groups.msn.com/HelpforFMS.
    Hugs gipsie
    xxx
    • septemberblues
    • By septemberblues 26th Oct 08, 3:14 PM
    • 825 Posts
    • 3,456 Thanks
    septemberblues
    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
    Originally posted by beeka
    Im on amitryptiline 150mg and yes, I have put on a little bit of weight, but my face gets puffy sometimes at this dose, I think it could be water retention or something, I read somewhere that if you're on ami you should avoid salt, as that's what makes you puffy IYKWIM.
    KEEP CALM AND keep taking the tablets
    • redbull08
    • By redbull08 26th Oct 08, 3:21 PM
    • 3,126 Posts
    • 32,407 Thanks
    redbull08
    Hi
    I have FM
    Ive been in a few car accidents (not my fault), last one car was a write off, guy ran into back off me
    i never related FM to accidents
    also have LCIS (4 OPS) & now thyroid nodules
    i go for needle biopsy on thurs, but they say my thyroid is ok?
    can you get DLA for FM alone?
    i have arthitis & IBS as well as other ailments.
    im tired ALL the time, no energy, live with a LOT of pain
    i am going to try & take a job as Ive not had benefits.
    great thread thanks
    • redbull08
    • By redbull08 26th Oct 08, 3:27 PM
    • 3,126 Posts
    • 32,407 Thanks
    redbull08
    I have FMS too was diagnosed in 2005 after a bad patch where I had flu like symptoms then pains everywhere for weeks. I still work but like another poster I work mainly from home so I can manage my work around the bad days.

    .
    Originally posted by nearlyrich
    i feel like ive always flu, what work can be done from home, ive always wanted to ?
  • philnicandamy
    i feel like ive always flu, what work can be done from home, ive always wanted to ?
    Originally posted by redbull08
    I've just started on the path of web page design & IT security working from home...find its far better now than having to worry abiout how I manage a normal working day
    • poohbear59
    • By poohbear59 26th Oct 08, 4:12 PM
    • 4,826 Posts
    • 55,815 Thanks
    poohbear59
    Hello all.
    I don't have Fibro (well, that's been diagnosed anyway!), but have Lupus, MCTD, Lupus and T-Cell Lymphoma.
    I understand the suffering you all have as my pain seems very similar to Fibro.
    Can I be an honorary member of the group please?
    just read about the weight gain with Amytriptiline - great news on top of my Steroid induced hunger! Have just started taking Amy for muscle spasms and headaches (not yer run of the mills - really crippling).
    also have a stock of Tramadol, Co-Codamol, Co-Dydromol, diclofenac and Paracetamol. the only thing I found really effective was Co-Praximol and they took the damn thing off the market! :rolleyes:
    I was convinced the "mind fog" was just me, so am slightly comforted by the fact that it isn't iykwim.
    Originally posted by Careful with that Axe
    Just yesterday I had to explain my pain and other symptoms by saying it was similar to lupus but not the same. Your stock of drugs reads like mine. I have just started on steroids too so I hope I don't gain more weight, I don't think my little legs can carry any more extra .

    Yesterday a friend told me that some people who are disabled can get a discount on electricity costs. I have e mailed my power provider and I will post what I hear in reply.
  • Careful with that Axe
    There's a thread on savings on energy costs on this board. and info on many other discounts I wasn't aware of.
    Weight gain and hunger with steroids does largely depend on the dosage. For me it's a see-saw. If I take more steriods, I take less painkillers and vice versa.
    Obviously, the smaller the dose of steroids the better in the long run. I manage on 5mg of Prednisolone a day, and try to take as few pain killers as I can.
    Athough, that being said, my monthly script comes to me in a carrier bag and I save money on my annual prescription pre-payment in the first month I use it!
    And I'm very, very lucky to have a fabulous GP who is incredibly supportive .

    p.s. I've come to the conclusion that most AI problems have overlap symptoms. Also, a family history of AI probs makes it more likely you develop one. My Mum had SLE and also developed a lymphoma.
    Last edited by Careful with that Axe; 26-10-2008 at 5:49 PM.
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
  • raeh
    I think the hardest thing for people to understand is the fact that you are in constant pain, all day, every day and that you are so exhausted you could cry sometimes? I have friends who as caring as they are, they just cant understand that an early night wont help me, in fact that makes it worse as i have to then unstiffen myself as iv laid longer in bed.

    I have a good friend that i have met online who also has FM and we make each other laugh every evening on yahoo chat, telling each other where our pains are today

    As someone else said this thread is nice, as it isnt all people telling you how their pains are worse than yours, as so many fibro 'help groups' seem to be.

    thank you everyone for being here
  • gipsie
    We Could Help You.
    I think the hardest thing for people to understand is the fact that you are in constant pain, all day, every day and that you are so exhausted you could cry sometimes? I have friends who as caring as they are, they just cant understand that an early night wont help me, in fact that makes it worse as i have to then unstiffen myself as iv laid longer in bed.

    I have a good friend that i have met online who also has FM and we make each other laugh every evening on yahoo chat, telling each other where our pains are today

    As someone else said this thread is nice, as it isnt all people telling you how their pains are worse than yours, as so many fibro 'help groups' seem to be.

    thank you everyone for being here
    Originally posted by raeh
    Not all Fibro groups talk about their pain everyday or try to out do each other on how much pain each of us is in that day,we do have loads of fun , chat about other stuff , play games. We also on my group have loads of info to help you to cope with your FMS and info to try to explain to people how your FMS effects you in your daily life. You should give us a chance we maybe able to help you.http://groups.msn.com/HelpforFMS
    Hugs gipsie
    xxx
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