Allodynia

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This topic contains 21 replies, has 9 voices, and was last updated by  mandimoo 5 years, 11 months ago.

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  • #20722

    Millie
    Participant

    Hi,

    I’ve just registered on this site. I have been suffering with nerve pain the last 3 years which until recently was just in the location of the affected nerves. The last few weeks I have developed Allodynia in new areas which is driving me crazy. The lightest of touch is painful on my skin, my clothes hurt, showering is painful and I am having to tie my hair in a ponytail to stop it brushing against my neck. I would love to hear from anyone else who suffers with Allodynia and if you have any tips to try to stop the pain flaring so much. So far the pain meds I have tried to date are Amitriptyline, Gabapentin, Pregabalin and I’m about to start Duloxetine (Cymbalta). My medical history is complicated as I also suffer from chronic migraine and am not allowed any opiates as these will cause rebound migraines so my options feel quite limited.

    #20723

    Champagne
    Participant

    Hi Millie

    Welcome to the site. I don’t have such severe symptoms as you but around my thoracic area I am always extremely tender. I only wear a very loose bra on the odd occasion when I can’t get away without wearing one and then it is off the moment I get home. On some days even wearing a loose cotton vest can be painful and my skin feels as though it is bruised and burning. I am on cocodamal and DHC continus for general fibro pain and arthritis, pregablin for the neuropathic pain I get which causes intense burning and feelings like electric shocks. I also use Versatis patches on the worse pain areas. I find trying to keep my body at a comfortable temperature helps as if I am too cold or too hot the neuropathic pain and tenderness certainly increases. Also wearing natural fabrics that breathe rather than synthetics helps. If have found having a warm bath helps when the neuropathic pain is at its worse and trying to do something to distract my mind from dwelling on it and general relaxation. Hope the Cymbalta helps you. x

    #20724

    Millie
    Participant

    Thank you Champagne for the welcome and your reply.

    #20725

    Anonymous

    welcome to the site I can understand the unable to stand the feel of clothing .I have the same thing with my legs I have to wear baggy shorts and no underwear as the feel of anything against the skin feels like crushing /burning .I described it as trying to put a pair of tights made for a baby on adults legs they would crush like mad {providing they did not split } I know its not the same as your problem but I do understand that feeling its horrible .some of the team here tried a device maybe jan could help you with any relevant information .I did not part in the trial as my pain is mainly mechanical lower back pain and I believe that the device the alpha stim was more a peripheral nerve device and as long as I wear the shorts I can put up with the leg pain its the back pain that kills me .have you tried a TENS ??.I could not take the pregabalin or gabapentin as they made me retain a dangerous amount of water and I gained a massive amount of weight in a very short time .sorry for you pain but your in good hands here with some very kind people
    kris

    =================
    ALIF and Millie, the device referred to is the Alpha-Stim. The trial has finished now, but there is a lot of information about the device on this forum. You can find it if you use the search box at the top of the forum and search for Alpha-Stim. The website for information is
    http://www.themicrocurrentsite.co.uk/

    Jan at PainSupport

    #20726

    Millie
    Participant

    Hi ALIF, many thanks for your reply. I haven’t tried a tens machine but I am quite curious about them. Does a tens machine work on nerve pain of the skin or is it more for deeper pain? I did have a look online a while back but found it all a bit confusing to know what to go for. I did read the Alpha Stim posts but was a bit concerned about folks reporting headaches and I am being treated for migraine so don’t want more headaches!

    #20727

    Anonymous

    hi Millie
    TENS work on the peripheral nerves best to google TENS for a better explanation.one tip you don’t have to spend a fortune on a TENS machine but don’t buy a very cheap one .you want one that has easy settings I have two units one is the very good no longer made acticare and the other is a touch TENS .the touch TENS was about 25 pounds from amazon its easy to use and has setting like .A/B/C/D//E rather than dialing in the frequencies {some TENS units you need a degree in physics to operate them .I use C on the touch tens .it feels like .throb …throb …throb on your skin .you will know what I mean when you buy one .happy shopping
    kris also Manchester}

    #20728

    KathyM
    Participant

    Have you been checked for CRPS? Allodynia is a classic sign. To be honest I haven’t found anything that has helped mine treatment wise. TENS doesn’t touch it for me but I do need to reassess where I place it now my CRPS has spread.

    That said there are ways to manage the allodynia – working out which types of clothing help/hinder is one. I wear leggings with just about everything as loose clothes rub my CRPS areas more. That said, I do have floppy, super soft, “arabian” pants that don’t aggravate it and act as a barrier to breezes etc. I also have some supersoft jamas that I can’t live without – they’re not overly loose but are cuffed at the bottom and made from the softest material ever (it’s just cotton T-shirty material but feels soooo much softer) and I can’t feel them once they’re on.

    Duloxetine is a bit of a new favourite for the doctors to try, and it can work wonders for some people (it’s being massively prescribed for Fibro now apparently), but in my experience it had quite drastic side effects and withdrawal is a big issue to discuss with the doctor. I thought I was out of the dangerzone when I’d had 2 weeks without and without withdrawal symptoms, then had a run of issues which are still ongoing after 5 weeks that are being directly attributed to it. There is a lot of information online about the difficulties of coming off duloxetine, so it might be worth having a read and discussing it carefully with the docs xxx

    #20729

    Amanda
    Participant

    Millie

    Allodynia and crps are related, it’s tricky to live with but as suggested by others soft fabrics are very useful, I never wear any harsh fabrics; strange as it seems I was told to keep stimulus on the skin to stop the spread of crps. By this I mean putting cream on the area, and massaging gently as you can tolerate to try to confuse the surface nerves that this stimulus is normal. You can also try heat on the areas but not hot just warm flannels and also light touches of items like a feather to get the area desensitised.
    If you search on google about crps you will find many articles about the desensitisation of nerve pathways.

    #20730

    Anonymous

    Hi Mille I got a really good tens machine that you can’t buy in the shops from the physio therapy team at my local hospital. My Doctor sugested that she thought a tens may do me good and told me that “it is best to have one recomended for you by physio rather than buying one in the shops as you may not choose one that suits you”. She wrote me a note to give to my physio therapist sugesting a tens machine may help my nerve pain and they then gave me a appointment and sugested a trial of a tens they thought would suit me (it was a yours tens two machine) and said if it worked for me then I could have a vat discount as it was for pain relief. I ended up getting a really good hospital tens machine that you can’t buy in the shops for £34 instead of fifty odd quid.

    #20731

    Di
    Participant

    Wherever you buy a TENS machine you don’t have to pay VAT if you can prove it’s for a disability. The company I bought from just asked me to sign a declaration form.

    #20732

    Millie
    Participant

    Thanks for the replies. I believe this allodynia is caused by central sensitisation and I know this is involved in crps. Amanda, I am a pudendal and inferior cluneal nerve patient who has been to Nantes Nantes and had surgery. Do they do ketamine infusions in France for central sensitisation and allodynia? This is really scaring me because I was doing better but now this allodynia is proving very difficult to tolerate.
    I am concerned about duloxetine, I have read about the withdrawal syndrome. I was on gabapentin and came off it to try pregabalin and then this allodynia started. At first I thought it was a reaction to pregabalin so came off it but now I’m wondering if the gabapentin was helping and since coming off it all this has flared up. I have a GP appointment on Thursday, this spread has happened since I saw my pain consultant and I am trying to contact him but failing.
    I am wearing leggings because where trousers brush against my skin it is too painful. It’s more tricky around my neck. I don’t think my partner realises how painful this is.
    Does anyone know if ketamine infusions are done in the UK.

    =======================
    Hi, I have removed the name of a member of the medical profession as it breaks Forum Rule 6.
    ‘Please do not name specific members of the medical profession in your posts’.
    Thanks. PainSupport Moderator2.

    =======================

    #20733

    Jan Sadler
    Keymaster

    If you enter ‘ketamine’ in the search box at the top of the forum you will find lots of information.

    #20734

    KathyM
    Participant

    Not as far as I’m aware but if you find out differently, please let me know! I am pretty sure I have pudendal nerve issues involved in my problems too but the pain clinic don’t want to know. All I can say is that I truly hope you get some relief very soon – if it is CRPS, the sooner it is treated the better the outcome chances. Keep pushing, thinking of you here and hoping for the best for you xxx

    #20735

    Millie
    Participant

    Kathy,

    Would I be able to email you?

    #20736

    Val
    Participant

    Welcome Millie, The nerve pain you describe seems very similiar to mine which is due to Arachnoiditis and Fibro and like Alif describes too, as most of my pain is below the waist. I have tried most of the nerve pain drugs etc but I couldn’t take them. I have also been prescribed Duloxetine, and although I am in awful pain 24/7 I am too frightened to try it after reading how others have had bad experience with the side effects, I also have cardiac problems too, the advice on label tells you to be aware of that. But it may help you, I hope it does. We all react different to the meds. So I can empathise with how you feel, but I can’t help you very much. I only hope something works for you very soon and I wish you all the best of luck

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