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living with a chronic condition (part 4)

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  • Paparika
    Paparika Posts: 2,476 Forumite
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    black_paw wrote: »
    i don't have stings, but have lots like pins and needles ..numbness...and stab and twist knife feeling !
    oh i get the numbness in my left hand... and i'm left handed too... typical hehe
    Life is about give and take, if you can't give why should you take?
  • pipkin71
    pipkin71 Posts: 21,821 Forumite
    I get the stings in my foot, and sometimes a sensation that I'm being jabbed with a lighted cigarette. The worse one is the feeling of a red hot poker being oushed through the big toe :eek:

    I also experience the pins and needles and numbness, but it has been attributed to the nerve damage.
    There is something delicious about writing the first words of a story. You never quite know where they'll take you - Beatrix Potter
  • TOBRUK
    TOBRUK Posts: 2,343 Forumite
    Paparika wrote: »
    Just a question, i forgot to ask the doctor this actually..
    any of you get what i can only describe as stings..

    when in France i had a stabbing sensation on my leg like i was being stung, OH and my mum thought maybe something stuck in my trousers, and when i looked there was nothing there and it continued for a few hours, then last week i told OH that i had 'stinging sensation' on one of my toes, could he look as i couldn't see anything... again nothing to be seen, and for the past week the feeling has moved to the bottom of my foot on the fleshy bit, just below the toes..... nothing again to be seen, its strange, it doesnt hurt bad, just feels like i am being stung.

    anyone get this... is this nerve pain at the nerve endings?

    no diagnosis i know, just wanted to know if anyone else got this..
    i will make a list to ask the neurologist next week and that will be on the list

    I get this but have only had it top of my foot below the toes. Have never told anyone and haven't mentioned it to the doc (so many other things going on to discuss!) but as you have described, like a sting - I have looked when it's happened but couldn't see anything to my surprise. Happened so many times I don't look anymore but just rub it, but if rubbed it burns - very strange.
  • TOBRUK Tramadol is Morphone Salts and can be very effective, but I've found I get breakthough pain with it and if I'm on it for any length of time it give me dreadful headaches, so I keep it for times when nothing else touches the pain.
    I would deffo ask GP if you can be referred back to the Pain Clinic.

    Pap Hope you find something suitable homewise soon. You mentioned numbness in your hand - have you been checked for Carpal Tunnel Syndrome? Would be worth mentioning it on your next medical appointment.

    Had a call this morning from Physio at Surgery. After waiting 10 weeks for an appoinmtment, they want me to go in on Friday and despite being knackered I dsidn't feel I could say no as it's for the first assessment in 18 months and my needs have changed so much. Hope to get some longer wrist splints to help with that pain until I get the operation done to sort it once and for all.

    On the stinging thing, I get it at the back of my neck sometimes, but I'm more familiar with skin burning if it's rubbed or scratched. With me it's part of the Mixed Connective Tissue Syndrome, but I think it can be nerve endings too.
    Have a good day all.
    I must go, I have lives to ruin and hearts to break :D
    My attitude depends on my Latitude 49° 55' 0" N 6° 19' 60 W
  • Unity
    Unity Posts: 1,524 Forumite
    Part of the Furniture 1,000 Posts Combo Breaker
    raeh wrote: »
    :hello: to all the new and old people posting, its lovely to see that a change of thread name can bring in people :)

    back to work has left me in a bit of a flare at the moment and I'm feeling a bit negative because of the pain, so im trying to concentrate on the nice chat in here :)

    Unity I hope you start to feel better very soon, so much all at once wasnt it? Has your son [or you?] plans for his birthday? I hope he feels better for it and can celebrate properly.

    Tomorrow 'apparently' is going to be nice weather so I hope it brings a good day for everyone x

    Hi Raeh - The weather is lovely here today - doesn't half lift the mood :T. DS knew he wouldn't be able to celebrate so soon after his surgery, so the plan is for a family get together on 19th when DD's will be arriving from both ends of the UK :D.

    BZ - With DS being home from uni, his mates are scattered all over the country, but none really close - the only one who lives near has a new baby so we wouldn't ask him for obvious reasons :eek:. Mine are pretty scattered too and I don't feel right asking in case by some chance (even if it's purely coincidental) they come down with it :o
    pipkin71 wrote: »
    Hi Unity.

    I have peripheral nerve damage, following a spinal injury which is causing the drop foot, as signals aren't reaching the brain that it needs to move, pick up ect.

    I've recently started having problems with my hands - trigger finger being quite a problem at the moment, and the walking sticks are adding to the problems with my hands as I have to rely heavily on them :(

    I've got an AFO for the foot, but it does rub and causes open sores if I'm not careful. It's a horrible plastic thing, but I tried an AFO made from fabric but it didn't give enough support.

    How did you get on with the rollator?

    Welcome to the spinal injuries camp then ;) I think there are a few of us with these. Mine happened when I was 17 which is erm :rolleyes: shall we say - quite a while ago now :D.

    I didn't manage too well with the rollator as I find it difficult to get into the right position to walk properly. I always seemed to be slightly angled forward at just the wrong place - too painful by half, but that is just me :(.
    TOBRUK wrote: »
    Hello again, had a sleep around 5pm and woke up at 6.45pm and didn't know whether it was morning or evening!

    Hi unity
    Thanks for that Unity.

    Well I saw a pain clinic nurse (she was wonderful) at the hospital and she wasn't a bit worried in me having this. She wasn't best pleased with them, when I went into hospital they asked me for my prescription medicine because they would need them so I managed to get my sister to fetch them in. I didn't know what happened when you went into hospital! They locked them into a draw section of my locker and they dispensed them when they did the drug round.

    Well amongst my tablets were co-codamol and I was never given them. The pain nurse was cross because they had been giving me paracetamol, she said those are absolutely useless for you, I shall have to get them to give you the co-codamol and you are also allowed tramodol, you can ask for them! I'd never heard of tramadol. She also wanted to give me ametriptilin (no idea why) - I told her that I thought I'd had them before but they didn't agree with me. She said that we could try them and if I was fine with them we should then increase the dose as she would see me the next day. Trouble is I was discharged the next day before I saw her again! I wonder if they will arrange for me to see her again? Do you think? Anyway, I shall be seeing my GP on Friday so hopefully I shall remember to ask her, I'll see if she gives me a repeat of the amitriptilin anyway.


    Thanks Bigzippy, I hope it gets sorted too I've got a scan on Monday for them to investigate further and see the surgeon a week Tuesday so I'll see then what they decide to do. They will know what kind of cysts they are and the size!

    I've just had a bad episode, well from Friday night until yesterday evening, doubled up most of the time and vomitting - I'm exhausted! It's just so nice to have some relief and be able to lie down!
    Sorry if I'm rambling or breaking the rules - whatever they are! I've got brain fog!;)

    You might need to ask your GP to be referred to the pain clinic nurse - a good idea as they are often more informed than GPs about the treatments available for long term and chronic pain.

    I can say with regard to Amitriptyline (not giving medical advice here - just stating what is a recognised side-effect on the information leaflet) if you have a sleep disorder - Ami can make it worse. I have nightmares and very vivid dreams within seconds of falling asleep and these were made far worse. However Nortriptyline, which is very similar is reportedly better in this regard - although it is more expensive and hence not widely publicised ;):whistle:. I even have a friend whose doc told her it would interact with her other medication, although the pain clinic nurse looked it up and told her this wasn't the case!

    I think I have turned a corner :T at last - but still feel about as rough as when I had a reaction to cholera injections back in the '70's - not good _pale_, but if I can get through today without vomiting it will be an improvement.

    Enjoy the sunshine :j
    Some people hear voices, some see invisible people. Others have no imagination whatsoever :D
  • jazabelle
    jazabelle Posts: 1,707 Forumite
    Hello all, I am new here. Sorry for the very long first post, just wanted to tell you all about myself and where I am up to! I have had constant pain in my neck and back for seven years, but has spread into what I would describe as every muscle in my body now. Different joints flare up, particularly my wrists, I am constantly tired and have that huge list of symptoms that a lot of you will be familiar with!

    Awhile ago I stumbled on the illness Fibromyalgia on the internet, and was thrilled as it fit pretty much every symptom I had. I wasn’t the only one! Not that I would wish this on anyone else, but nice to know you aren’t crazy or alone. A brought this diagnosis up to a number of GPs, who all agreed with it. One did the 18 point trigger test, and said it really does sound like you have it. As you know, you then have to see a Rheumatologist to get it officially diagnosed.
    I saw a doctor at the pain clinic two weeks ago, who was awful.

    He told me the pain was probably all in my head, that there was nothing physically wrong with me, and acted like I was invisible (he directed everything at my mum). He did refer me for an MRI to “prove there is nothing wrong with me” and to a Psychiatrist. Nice. There is nothing wrong with seeing one, I just don’t think talking will cure me.

    I then saw a Rheumatologist last week and he said he didn’t think it was Fibro. He didn’t ask my symptoms, didn’t ask what tests I had in the past (e.g. all the blood tests you have to rule out other stuff) and certainly didn’t do the 18 point trigger test. He did diagnose me with Hypermobility Syndrome, however. I had heard of it, but didn’t know much about it. I went home and researched. When I read about Fibro, from the basics to the in-depth books, it was like a connection, reading about my life. Hardly anything about HMS fits me. I have pain, yes, but I’m not double-jointed, never dislocated anything, not injured frequently in the way that’s described. So I’m sceptical. He did say I had it in my knees and fingers, and while my fingers appear normal, I can bring my foot up to my face with ease. Whether that is HMS, I don’t know. It seems more like a flexible hip to me!

    Yesterday I was turned down for DLA at the tribunal, which I detailed in another post. So at the moment I’m feeling let down and not sure what to do! I’m not sure I believe in my diagnosis, and can’t understand why he doesn’t think it’s Fibro. He gave me no reasons for this.

    I have no pain relief at the moment, and neither the Pain Clinic or the Rheumatologist discussed medications with me. My GP said they can’t put me on anything higher than what I’m on – so I’m a bit stuck!

    Off now for Deep Tissue Massage, and then to the Physio.
    "There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow." - Orison Swett Marden
  • raeh
    raeh Posts: 2,575 Forumite
    hello jazabelle and welcome :D

    I think over the years we have all seen both ends of the spectrum, with people [professional] that think its all in the mind [how many times has it been said im depressed and that causes pains ... err nope im in pain constantly and that makes you pretty bloody depressed!] and then you will fond someone really supportive you just makes you feel theres help out there even if theres no cure? I was treated for numerous illnesses over the years and when i saw someone new by chance and they mentioned fibro and gave me some info I was amazed that it described me completely :) This thread has been a great support for me even if its just to ask doesn anyone else get..... and when you get replies of 'oh yes all the time' you know its not in your head :D
    good luck with finding someone supportive and keep chatting in here ;) it really does help

    unity, that will be lovely to have all the family together on the 19th :D the weather again is nice here so makes me feel better ;) washing is out and now im off for a wander with a friend to a local retail park. I love it as we can park right outside and no walking ;)

    have a good day everyone whatever your plans :)
    2009-£7500 2010 £10800 2011 £2000


    Thank you to everyone who posts comps xxx
  • Unity
    Unity Posts: 1,524 Forumite
    Part of the Furniture 1,000 Posts Combo Breaker
    Welcome Jazabelle,

    Crumbs you are going through it at present. Unfortunately there are some rheumatologists who don't believe in fibro and it sounds as if you may have met one. It is exceptionally galling to be met with this attitude since the World Health Organisation recognises the syndrome and presumably they base their decision on in-depth research by many informed specialists! :rolleyes: It is difficult to know how the rheumatologist could rule out fibro without doing the 18 point test :rolleyes:.

    Nevertheless, you can ask for a second opinion and I am sure someone on here will remember the name of the Professor who is an authority on fibro. It might help to look through the earlier incarnations of this thread fibromyalgia parts 1 through 3. In the mean time, ring up today for another set of DLA forms and get the help of a welfare worker or CAB to fill them in. You need to know how to answer the questions in the way the DWP want them answered ;).

    HMS doesn't rule out fibro in fact it is yet another problem with some similarities. I'm double jointed in my hands and despite my spinal injury I can still touch my face with my foot, so I put it down to my hips as well :D

    Don't give up, you are among friends.
    Some people hear voices, some see invisible people. Others have no imagination whatsoever :D
  • bigzippy
    bigzippy Posts: 4,034 Forumite
    Paparika wrote: »
    Just a question, i forgot to ask the doctor this actually..
    any of you get what i can only describe as stings..
    Yes, I do. Very randomly and out of the blue, quite a lot. :rolleyes:
    TOBRUK wrote: »
    I shall let you know the result of scan - I should know in 2 weeks when I see the consultant, although the scan is a week today I doubt if I'll be told that day - I don't expect they are allowed to say their findings there and then.
    Cheers ears :)
    "I am indelibly stained by hope and longing" - Nuts in May
  • Paparika
    Paparika Posts: 2,476 Forumite
    Part of the Furniture 1,000 Posts Photogenic
    blimey jazz, your not having a good time at the moment.

    keep pestering your gp to see a rheumatoid arthritis consultant, ignore the comments from the pain clinic (my turn next month - god help them if they give me that attitude)

    I've been poorly for years, without knowing what was wrong, false diagnosis etc, it is such a slow process. But, don't stress about it, it won't do you any good,

    that deep muscle therapy sounds so nice...

    keep strong, and we are all here..
    Life is about give and take, if you can't give why should you take?
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