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  • FIRST POST
    • soolin
    • By soolin 6th Sep 09, 5:17 PM
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    soolin
    living with a chronic condition (part 4)
    • #1
    • 6th Sep 09, 5:17 PM
    living with a chronic condition (part 4) 6th Sep 09 at 5:17 PM
    Welcome to the new thread.

    This thread is for the discussion about living with fibrmyalgia and connected benefits and moneysaving issues.

    Discussions about pure benefits should be taken to Benefits & Tax Credits
    Family issues should go to MoneySaving in Marriages, Relationships & Families
    Special occasion chat should go to Special Occasions & Celebrations
    general chat needs to go to the The Money Savers Arms.

    Many thanks for your co operation.

    My wording on this is terrible and I apologise-I am open to suggestions on how to start the opening post so that newbies can see what is appropriate to post here and which discussions will be moved.
    I'm the Board Guide for the Ebay Board , Charities Board , Dosh & Disability , Up Your Income and the Local MoneySaving-England board which means I volunteer to help get your forum questions answered and keep the forum running smoothly. However, do remember, board guides don't read every post. If you spot an illegal or inappropriate post then please report it to forumteam@moneysavingexpert.com (it's not part of my role to deal with this). Any views are mine and not the official line of MoneySavingExpert.com
    New to Forum? Guide
Page 19
  • sammy10
    Im not too bad thanks but your not allowed to ask me in here its "off topic" :rolleyes: So I wont say how are you
  • sammy10
    Well I confess to not knowing anything about fibro so I googled it to see what you are all going through and it was like reading about myself
    I have put up with constant pain for years and when I have been to the gp about it ive always been told its because of life. course your in pain your pregnant, just had a baby, have a job, have a busy life etc. Always another reason. I have mentioned other symptoms too but been fobbed off.

    Now Im off to the gp on thursday to discuss my worse than useless neuro and I know if I mention it it will be because of the epilepsy now. My pain has got worse since my diagnosis but I lost my driving licence so have to walk more, would this cause the symptoms to worsen. When I was driving the pain was worse in my hands, neck and shoulders now its just everywhere.

    I dont really want to go steaming in there and say I have this but not sure what to do, I cant live like this much longer but dont want him to think Im a hypercondriac either but the pain is very real.

    Sorry for going on but I feel like a light went on when I read the info but the gp has taken the bulb out before I have even seen him. Im living half a life and hate it.

    Help
    • jazabelle
    • By jazabelle 21st Sep 09, 11:21 AM
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    jazabelle
    Sammy - a GP can't diagnose Fibromyalgia. You can say you think you might have it, but ask for a referral to a Rheumatologist. However, I've had it badly for 11 years, and still don't have an official diagnosis - I just know it's what I've got. Some doctors sadly don't even believe in it, and others will fob you off with nonsense like "oh it's just because of bad posture." Others don't like to put a label on it. I've seen 4 Rheumatologists and 3 Pain Consultants, and only have one diagnosis of Hypermobility Syndrome.

    So, it may be that the GP won't agree, or even the Rheumatolgist, just to warn you. In a lot of cases it is a big battle to get it diagnosed.

    Just to add, fibro is usually more than pain - constant fatigue is another of the huge symptoms, along with a big list of other stuff! While it's not 100% known what causes Fibro, many doctors think it is that people with it don't get the final stage of restorative sleep. Studies have even been able to recreate the symptoms by waking up healthy people before they get to this stage.

    Diagnosis is a process of ruling everything else out. There are many illnesses that cause similar symptoms, so ask for blood tests to rule all the obvious ones out. An MRI would help, although again, I STILL haven't had one after all these years although am now on the waiting list. Then, once everything else is ruled out - there is an 18 point trigger test, where they press 18 commons points of pain, and you basically need to say "ow" to 11 or more to be diagnosed. But AGAIN, no Rheumatologist has done this for me yet!!

    Finally, there isn't really a cure. Certain things help, like taking it easy, getting lots rest, massage, heat, ice, TENS machines, relaxation and light exercise.

    Any other help or questiosn, let me know!
    Last edited by jazabelle; 21-09-2009 at 11:26 AM.
  • sammy10
    Thanks Jaz, Im not expecting much from the GP even if he could diagnose. I have a lot more symtoms than the pain but thought I had rambled enough so didnt put them.
    My kids school is a mile away and even walking at a 6 year old pace I cant do it in one, I have to stop for a rest. Im exhausted all the time.

    Sorry maybe its just me being stupid but I cant carry on like I am, I cant even be a proper mother.

    I have a bllod test once a year as I only have half a thyroid and he always says he will just check everything, not sure if that will cover other things
    Last edited by sammy10; 21-09-2009 at 11:34 AM.
    • jazabelle
    • By jazabelle 21st Sep 09, 11:40 AM
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    jazabelle
    There are some medications that can help - you'd need to speak to your doctor/rheumatologist. For example Lyrica (know as pregabalin in the UK) can for some people help immensley - then for others like myself, it did nothing. Again amitriptyline can help others, and do nothing for others. Sometimes anti-inflammatories can help, or painkillers. Start with over the counter stuff, inbuprofen is a good one, as it's both an anti-inflammatory and a painkiller. Then ask the doctor if it's not helping.

    I hate to say this, but you kind of have to learn to live with it, unless you're lucky enough to stumble upon the right medication or doctor. It took me along time to wrap my head around this - and I still search for cures through doctors and complementary therapies, or just something to help manage the pain.

    I've heard Pilates is good, and I'm starting next week with classes. Also swimming is great, because it's low impact and takes the weight from your joints. Don't do any crazy exercise, as it usually makes it worse.

    It's a mindset you have to change - if you find things difficult, it's okay to say so, and try and make it easier. Like a mile is easy for a 'normal' person to walk, but I'd have to drive. Of course you can't, so that makes it very difficult. Do any other mothers walk the same way, that could take your child when you're having a bad day? Could your partner?

    I find the illness is incredibly difficult - I can't imagine how hard it would be with a child. Don't be hard on yourself, take breaks when needed. Don't compare yourself to others mothers that may be able to sit and play with their child - they are lucky enough to have health on their side.

    Sorry for the long ramble!
  • sammy10
    Ive tried ibuprofen but its like taking a paracetamol when you have cut your arm off:rolleyes: Lyrica is an anti epilepsy drug too but not the one Im on, Typical lol.

    The walking thing I will have to deal with, I have a large dog to walk too. There are 2 other mothers who live near me but I made the mistake of telling them I had epilepsy so they keep away from me now in case they catch it My oldest takes himself to school but the other 2 are to young, dh can do it sometimes but he has to be in work early most of the time.

    Guess I will have to just carry on as I am and try to ignore it all but some days I wake up feeling whats the point. Im one of those people who pretends everything is ok but inside I feel like throwing myself under a bus.
    • jazabelle
    • By jazabelle 21st Sep 09, 4:22 PM
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    jazabelle
    You can get stronger ibuprofen through the doctor - better than over the counter. Just try not to jump to the strong stuff too quickly - I've now reached a point where they won't give me anything stronger, and it sucks. Also, when you're starting out trying things, it's a good idea to keep a note on what medication you've tried, the doseage and the side effects - as you may try lots of different things, and it's easy to lose track.

    Lyrica also stops you wetting the bed, if that's an issue.

    So sorry to hear about the others mothers - ignorant idiots.

    I know what you mean, it's hard to drag yourself out of bed when everything hurts, you're shattered and you just don't want to do it anymore.
    • Paparika
    • By Paparika 24th Sep 09, 1:20 AM
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    • 2,352 Thanks
    Paparika
    Ok ppl i need your input.

    His nibs wants to get me a session with a Chiropractor for my birthday,

    I feel that this will be way too painful what with the fibro.

    so i suggested i asked the guys n gals on here what relaxing spa type would be good.
    Hydrotherapy? is one i can think of,

    but i would love to know what other things are out there, good and bad points..
    Life is about give and take, if you can't give why should you take?
    • jazabelle
    • By jazabelle 24th Sep 09, 10:33 AM
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    jazabelle
    If done properly, seeing a chiropractor shouldn't really hurt. However, not entirely sure it would help. Especially not just a one off. They CAN go over the top, you need to say GENTLE PLEASE!!

    I visited the local spa recently - it was relaxing, I just felt a bit bored! Their hydo pool was a big warm pool, with a ledge with lots of bubbles coming up! Then there was a jacuzzi with even more bubbles.
    • black paw
    • By black paw 24th Sep 09, 4:03 PM
    • 1,775 Posts
    • 1,147 Thanks
    black paw
    spa wins any time for me ..lovely hot bubbles ..feel normal again for a while
    the truth is out there ... on these pages !!
    Last night I lay in bed looking up at the stars in the sky and I thought to myself, where the heck is the ceiling.
    • mouseymousey99
    • By mouseymousey99 24th Sep 09, 5:20 PM
    • 1,829 Posts
    • 2,870 Thanks
    mouseymousey99
    Had a couple of sessions in whirlpools etc, nice, but be careful when you get out. It lures you into a false sense of being fine, when I climbed out it was as if lead weights had been attached to my legs.
    • bigzippy
    • By bigzippy 26th Sep 09, 3:20 AM
    • 4,033 Posts
    • 15,643 Thanks
    bigzippy
    Guess I will have to just carry on as I am and try to ignore it all but some days I wake up feeling whats the point. Im one of those people who pretends everything is ok but inside I feel like throwing myself under a bus.
    Originally posted by sammy10
    Speaking of buses...(tenuous connection alert) ...if you get the mobility element of DLA then you would - regardless of whether you can drive or not - get money for travelling expenses...eg instead of getting a car allowance, you get taxi/bus/petrol for other drivers allowance. Then you could take your kids to school in a taxi? There are also taxi schemes that purely pick up your kids from your house and take them to the school, and the same in reverse. From what I understand they tend to use the same drivers for safety etc. HTH? :confused:

    so i suggested i asked the guys n gals on here what relaxing spa type would be good.
    Hydrotherapy? is one i can think of,

    but i would love to know what other things are out there, good and bad points..
    Originally posted by Paparika
    There's been mention of acupuncture before on here, as both a good and bad thing. So I think you'd take your chances with anything like that. I struggle with really hot baths/showers and sometimes it makes me really nauseous, but the jacuzzi bath was brilliant at the cottage. Esp after my fall in Portpatrick (slipped and landed on my elbow and back on essentially wet&seaweedy slaps of concrete :rolleyes - I was expecting to ache and be stiff for days and days but felt loads better within 48hrs after using the jacuzzi bath every evening...
    "I am indelibly stained by hope and longing" - Nuts in May
    • Paparika
    • By Paparika 27th Sep 09, 12:36 PM
    • 2,390 Posts
    • 2,352 Thanks
    Paparika
    I'm still looking around for a treat. What i want (i think) is a pedicure, manicure, massage, facial...just a all over treat (but gentle)
    Life is about give and take, if you can't give why should you take?
    • jazabelle
    • By jazabelle 27th Sep 09, 1:17 PM
    • 1,690 Posts
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    jazabelle
    That sounds nice. A lot of complementary treatment can be painful, so those just sound nice and relaxing
  • sammy10
    Speaking of buses...(tenuous connection alert) ...if you get the mobility element of DLA then you would - regardless of whether you can drive or not - get money for travelling expenses...eg instead of getting a car allowance, you get taxi/bus/petrol for other drivers allowance. Then you could take your kids to school in a taxi? There are also taxi schemes that purely pick up your kids from your house and take them to the school, and the same in reverse. From what I understand they tend to use the same drivers for safety etc. HTH? :confused:


    .
    Originally posted by bigzippy
    Ive never applied for DLA :confused: Dont think I would get it. I do have a free bus pass but thats all. Thanks though.
    • bigzippy
    • By bigzippy 27th Sep 09, 9:02 PM
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    • 15,643 Thanks
    bigzippy
    Ive never applied for DLA :confused: Dont think I would get it. I do have a free bus pass but thats all. Thanks though.
    Originally posted by sammy10
    Why not apply for it? What've you got to lose?:confused: I think you'd have a good shot at it. Or at least ask your local CAB what help you might be entitled to?
    "I am indelibly stained by hope and longing" - Nuts in May
  • sammy10
    Why not apply for it? What've you got to lose?:confused: I think you'd have a good shot at it. Or at least ask your local CAB what help you might be entitled to?
    Originally posted by bigzippy
    I might do. The trouble is when its bad its really bad but then I can have a run of being ok so Im really not sure how I would fill in the forms.

    Will try CAB as well, thanks
  • kaj70
    Hi, I just want to add that i have M.E. i have had it for almost 10 years, and i am at the stage where it probably wont improve anymore. i do seem to have relapses, bad days and sort of ok days. I can walk but i am very limited as i get sever exhaustion and pain. I am telling you this as it is worth applying for DLA, I get both the care and mobility componants. which have been a godsend. i now have an automatic car, which without i would be housebound.
    With my car, a cupbored full of tablets and my lovely TENS machine i get by. but also being a single parent to 3 children, life can be somewhat of a struggle.
  • kaj70
    sorry, i didnt even introduce myself...HI, hope you dont mind me joining you all so late, i didnt know this thread was here
    • bigzippy
    • By bigzippy 27th Sep 09, 11:46 PM
    • 4,033 Posts
    • 15,643 Thanks
    bigzippy
    I might do. The trouble is when its bad its really bad but then I can have a run of being ok so Im really not sure how I would fill in the forms.

    Will try CAB as well, thanks
    Originally posted by sammy10
    I have been told, several times, to fill in the forms as if it's your worst ever day. Everyone (of us that I'm aware of at least) has the better days and the horrid days, as well as the ones somewhere in between. You have to fill it in as if it's the worst tho, as the worst come round all too often and the support has to be there for when it is the worst.

    sorry, i didnt even introduce myself...HI, hope you dont mind me joining you all so late, i didnt know this thread was here
    Originally posted by kaj70
    Of course we don't! Pull up a pew If you wanna join us in the (not so old) Crock's Cafe too..? We're allowed "off topic" chatter there y'see...:rolleyes:
    "I am indelibly stained by hope and longing" - Nuts in May
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