Such pain

Posted , 5 users are following.

I have thought for years I had Fibromyalgia,but no doctor would listen. They did various blood tests, nearly all negative and then asked if I was depressed! I am in constant pain all over.Its easier and more truthful to say everything hurts,than name a few parts! I also have Vulva dynia( yep arent I the lucky one!), which means sex is excruciatingly painful. Cant even have that 'pleasure' . It has been described as Vulval Fibromyalgia. I am plagued by bone numbing fatigue.I also get severe pins and needles in my feet. Sore eyes, mouth, throat, tongue.You name it, Ive got it! Does anyone know of anything that helps? I've been reading a lot about Amytrytoline. Does anyone know if it helps with the pain? Im so desperate.I have no idea what it feels like to feel well.

0 likes, 7 replies

7 Replies

  • Posted

    Hi I am Tess

    I was diagnosed with Fibro in June this year! Although sure i had it going on for about eight or nine years. I started on Ampytripline in August and feel it does help me with my sleep pattern. :lol: I had taken it before though a few years back for depression on a low dose and had no real side effects. This is why when it was suggested to take it again I went for it. I think if you can sort out the sleep then your pain won't feel as bad. :cry: I think it probably does dull the pain slightly but I still have pain everyday. Also I am not sure if the exercises I do help with the pain but I have definately not been as stiff. I was given exercises from a Physio who I see at my doctors surgery and recommended by my gp.

    I also have OA and only take co-proxomol or paracetomol for the pain.

    Can't take any anti-inflammatories or upsets acid in stomach.

    You will probably get some replies from the other girls on here as well.

    We are all a friendly bunch and try to help each other. We all take different things that help us. Some things will help one person and not another. It is just trial and error really. :cry:

    I do hope you get some help to sort your pain and other problems out. :lol:

    Take care

    Tess x x

  • Posted

    Hi I`m Linda

    I`ve had fibromyalgia for about 18 months, but like Tess feel it has been going on for several years. I take amitripylene as well and find it does help with my sleep pattern and maybe pain but not sure. I have chronic fatigue with the fibro too and some days that is worse than the stiffness and pain.

    I also have OA in my knees, toes and wrists but like tess only take pain killers.

    come on here and chat to us all we talk about all sorts not just fibro and have a good moan when things are really bad!!

    Love Linda

  • Posted

    hi folks using my sons comp today.. i have only been diagnosed in sept and all ur aches and pains are what we all feel on a daily basis.. i also have O A in my knees hip and left shoulder...

    had dwp doc out yesterday he just asked the same questions that are in the form that we all fill out for disablility he seemed nice but didnt say what he was going to write so its still awaiting game untill the 26th january,, im off out to shops tonight(as night time is when im less sore) to get some xmas shopping..

    hope ur all well and keep in touch

    di xx hugs xx

  • Posted

    Hi, thanks for your replies. I am interested in trying Amytriptaline.My main worry is any side effects,as I have a very sensitive stomach,so have to be very careful what tablets I take. I also have CFS,though as you probably all know, most drs arent very understanding of either condition. So many times I've wished if I had to be ill,that I had a more 'accepted' illness. God knows I feel like death most of the time! The pain is so bad. Over the years I've had so many blood tests etc and couldnt believe it when they came back negative.I got so angry at myself,thinking' why cant I do things without feeling ill if theres nothing wrong with me?' Then of course I made myself worse by forcing myself to do stuff when every fibre in my body was begging me to stop. I still do, cos I'm by nature,very active.Shame my body isnt anymore!

    How do you all cope every day with the pain and all the other syptoms? It impacts on every aspect of my life and I dont know how to deal with it.

  • Posted

    Hi There

    Im Lindy, welcome to the hood... smile

    I haven`t been diagnosed, had all the blood tests, same as yourself came back negative. 1 doctor told me it was due to having put on weight on my tummy! I went back and saw another doctor from the practice and he has referred me to rhuematology. Im awaiting the appointment.

    Im lucky, I don`t seem to have as much pain as the other girls. The fatigue comes and goes but for the last 3 or 4 weeks its hardly been evident. Aches and pains are mainly in my hands, elbows, shoulders, knees, I use Paramol, which u can buy over the counter. I don`t use anti inflammatories, (used to), as I don`t have inflammation, so no point. They didnt do naff all anyway.

    Amitriptylene is one of the older type anti-depressents, used for many things other than depression. Google it, u`ll find out some useful information. It can`t help to try it. It may be just the job for u chick.

    Take Care

    Lindy...x

  • Posted

    hi sherbetdab

    pains oh how i do know them like u im in constant pain like u i get annoyed i cant do things and like u all my blood tests come back normal... i have been diagnosed with fibro and when i was my best friend said to me.. u must be happy well actually no iim not like u i would prefer a condition that people understood i have lost so many so called friends who just prob think im lazy( which im def not) my life is either pain or fatigue i try and do things but like the other day when i wasnt feeling fatigued i done housework but by god i paid for it yesterday..

    so dont be alone come on here and have a good old moan.. and we do laugh sometimes but its a good lot of girls on here they all are very nice and i couldnt do without them xx

    di xx

  • Posted

    Hi,

    A few months late, and I can't help with the fibromyalgia, but I had (still have to some extent) vulva dynia. This started after a few bouts of thrush. It took months and months to find a doctor who would take me seriously as there were no outside symptoms apart from slight redness. I found that Gabapentin (a drug used in the treatment of epilepsy) really helped - after 2 years of not being able to have penetrative sex, and it sometimes being too painful even to be touched down there (I'd have to go knickerless a lot of the time), I gradually found a dose of the Gabapentin that worked.

    I coupled this with some counselling (by now the problem was psycological as well as physical), and using a lubricant called V Gel, from 'Higher Nature' as I found most other lubricants stung.

    Two years later we wanted to try for a baby, so I had to come off the Gababpentin bit by bit. Was nervous but the cycle of pain seemed broken. Sex was not as good as before the vulva dynia, but was fine.

    I find that whenever I have a flare-up of symptoms (itching, pain) I use miconazole - an antifungal and 1% steroid cream - for a few days.

    Good luck with everything

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