Any 'Erythromelalgia' Sufferers?

jennifer7
jennifer7 Member Posts: 15
edited 1. Apr 2010, 19:05 in Living with Arthritis archive
Im new to this forum, i have decided to join as my mum has recently been diagnosed with a combination of 'Fibromyalgia' and 'Erythromelalgia'. Unfortunatley she is really suffering at the moment and the tablets she has been given seem to be giving little or no relief. I was therefore wondering if anyone knows of any 'at home remedies' or treatments that could be of some help to her?
Many thanks :)

Comments

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -0001, 00:00
    hi can not help but want to say welcome some one will be on who knows good luck some meds do take three months to work but not knowing what meds she on or much about what she has can not give you any advice sorry
    val
  • jennifer7
    jennifer7 Member Posts: 15
    edited 30. Nov -0001, 00:00
    Hi, thankyou very much for your fast response!

    I can not say right now what she is on as i don't know for sure...she takes various medications for other problems but really hope there is someone out there that can help!

    She has been on these meds for a few months and there was no change, so the doctor increased the dose and still no change, she is really suffering :(
    It is effecting how she lives- she can no longer stand for very long and the pain never goes away! so yes if there is anyone here that knows about this disease please let me know!

    I am definately interested in learning all i can about it!

    Jennifer :)
  • snowball
    snowball Member Posts: 3,465
    edited 30. Nov -0001, 00:00
    Hi Jennifer welcome to the forum and sorry to hear your mum is suffering, i can't give you any advice on what your mum has got as i have r/a but i am sure others on here will. Have you tried arthritis research web site its www.arc.org.uk hope this is of some help.

    Julie
    ((((hugs)))) n xxxxx to ya all
  • jennifer7
    jennifer7 Member Posts: 15
    edited 30. Nov -0001, 00:00
    Hi Julie,

    Thankyou i will check this out right now :)
    Whats r/a ?? Im sorry im very new to all this but am eager to understand others conditions!

    Jennifer.
  • snowball
    snowball Member Posts: 3,465
    edited 30. Nov -0001, 00:00
    snowball wrote:
    Hi Jennifer welcome to the forum and sorry to hear your mum is suffering, i can't give you any advice on what your mum has got as i have r/a but i am sure others on here will. Have you tried arthritis research web site its www.arc.org.uk hope this is of some help.

    Julie
    forgot to say please let us know how you get on and there is allways someone here if you need to talk.

    Julie
    ((((hugs)))) n xxxxx to ya all
  • snowball
    snowball Member Posts: 3,465
    edited 30. Nov -0001, 00:00
    jennifer7 wrote:
    Hi Julie,

    Thankyou i will check this out right now :)
    Whats r/a ?? Im sorry im very new to all this but am eager to understand others conditions!

    Jennifer.
    rheumatoid arthritis i'm 41 and have 2 sons aged 18 and 20 and i know its hard on them, they don't like seeing me in pain but they do help me which is all i need from them. Take care.

    Julie
    ((((hugs)))) n xxxxx to ya all
  • jennifer7
    jennifer7 Member Posts: 15
    edited 30. Nov -0001, 00:00
    Oh i see, Im sorry to hear you are suffering, I hope you are well at the moment? It's good to know that your sons are so understanding and supportive :)
    Im sure i can understand your situation, i am 19 years old (one of four) and have to see my mum in pain every single day! Unfortuanately her constant pain is effecting her depression, it is so frustrating to have to sit by knowing that there is nothing i can do to help her pain.
    I will keep you updated, and please do let me know if you happen to see anything more of interest to me!

    Jennifer.
  • snowball
    snowball Member Posts: 3,465
    edited 30. Nov -0001, 00:00
    jennifer7 wrote:
    Oh i see, Im sorry to hear you are suffering, I hope you are well at the moment? It's good to know that your sons are so understanding and supportive :)
    Im sure i can understand your situation, i am 19 years old (one of four) and have to see my mum in pain every single day! Unfortuanately her constant pain is effecting her depression, it is so frustrating to have to sit by knowing that there is nothing i can do to help her pain.
    I will keep you updated, and please do let me know if you happen to see anything more of interest to me!

    Jennifer.
    Will do i'm sure you do a lot for your mum, being on here and trying to find as much information as you can to help your mum is a brilliant thing you are doing.

    Julie
    ((((hugs)))) n xxxxx to ya all
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 1. Apr 2010, 18:31
    Hi Jennifer

    I am so sorry to hear about your mum. Does she have it in her feet/hands or both? Have your googled any information about Erythromelalgia and alternative treatments? It was suggested on an EM forum i happened to fall upon, that wearing wet socks helped ease the discomfort in the feet for a time but one should never immerse the feet in very cold water.

    You could look at The Erythromelalgia Association (TEA). Their website is currently under reconstruction.

    I am sorry that I cannot offer any further help.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -0001, 00:00
    Hi Jennifer,

    Sorry I cannot help but I know it's awful when your mum is in so much pain. I'm sure she appreciates what you are doing for her. Best of luck to you both. Let us know how you get on. Ix
  • jennifer7
    jennifer7 Member Posts: 15
    edited 30. Nov -0001, 00:00
    Thankyou so much guys i really appreciate the replys!

    Yes Elna i have been doing my research and it appears to be very rare, so the tablets (naproxen) are all we are currently relying on!
    She does not suffer from it in her hands only her feet, and more recently the bottom of her legs (shin area). Her feet are constantly hot, bright red (more recently purple!), tender to touch, burning and swolen! She also experiences painful shooting pains down her legs! How long she can stand/walk is limited.

    I have yes had a look on the TEA and unfortunately there is no further information that can help, they have suggested elevation- which we do, and cooling- we have an air con unit in her room. Hopefully when not under construction some mpre info will be availible!


    Hope you are all well,
    Thanyou again Jennifer.
  • minky67
    minky67 Member Posts: 2,328
    edited 30. Nov -0001, 00:00
    Hi, I can only help on the Fibro side of things.
    I have Osteoathritis & Fibromyalgia.
    My meds if its any help are;Gabapentin for nerve pain (im changing to pregablins soon)
    Tramodol,oramorph & normal paracetomol for pain.
    Amptipyline for relaxing muscles & sleeping.
    Dicolfenacs; Anti-inflammatory.

    i try to have a hot bath most nights to help relax my muscles.
    I have problems with my tendons at the minute & have to get to the gp A.S.A.P.
    Im also under the pain clinic & have ben refered to OT for splints, aids at home & exercises for my hands.
    debs
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -0001, 00:00
    Could your mum be prescribed Gabapentin for the shooting pains in her legs? Worth asking her medic if she has not tried this med or something similar.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • jennifer7
    jennifer7 Member Posts: 15
    edited 30. Nov -0001, 00:00
    Hi Deb!

    Im so sorry to hear of your pain, it sounds awful!
    Thankyou so much for sharing this information with me, i recognise the names of a few meds but will have to get my mum to join the forum so she can have a chat with everyone as well!

    Im glad a hot bath gives you a bit of temporary relief at the least!!
    Unfortunately my mum can not take hot baths because she could not physically bare to put her feet in any hot or warm water which is such a shame because for her fibromyalgia a hot bath might help temporarily!!

    I have heard the pain clinic mentioned a couple of times, what exactly does it entail?

    i hope you feel better and get your more recent tendon problems sorted out asap! Thankyou again Jennifer :)
  • jennifer7
    jennifer7 Member Posts: 15
    edited 30. Nov -0001, 00:00
    Hi Elna, i think she is on gabapentin :)
    but it would be worth seeing if the dose could be increased!
    In fact i do think the gabapentin has eased the shooting pains slightly, which is really good!

    Jen x

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