Please answer me, even though I'm British!!!

Discussion in 'Fibromyalgia Main Forum' started by 123sandra, Aug 29, 2005.

  1. 123sandra

    123sandra New Member

    Apart from feeling like I've gone 10 rounds with Mike Tyson most days!!, The two most annoying symtoms are my feet and face!
    My feet and sometimes my legs feel like they are on fire! It does happen during the day but mostly at night when I'm trying to get to sleep. Any remedies out there? ( Apart from sleeping 2 foot off a fan, I've done that for 10yrs!!)
    2nd is really annoying. Imagine having an injection at the dentist to make your gum numb, then imagine your face getting it's feeling back but not all the way, when it feels cold and tingly, that happens nearly all the time, any suggestions of what it could be?
    Like I've already said GPs over here are in the dark ages were FMS is. Only been getting help for the past 2 yrs, had it for 10yrs, possibly 15!! Am only 39(nearly 40) Thanks Sandra
  2. 123sandra

    123sandra New Member

    Until I've been on the clinical trials a few more weeks, I won't be-able to get an appointment with the specialist that's treating me!
    England is nothing like America or Canada for getting treatment, well the right treatment anyway.
    The neurological test was mentioned sometime last year but weather I get it or not is another matter!!
    I don't think the 1st specilist liked me! He asked me to rate my pain from 1-10, I asked him which scale did he want it on, his or mine!! His being 10 mine probably 7!! Well I have had 4 kids only using gas and air!!
    I do know that the tingling sensation isn't anything to do with my teeth, the dentist told me that.
    It's a bloody frustrating illness. Not terminal and (so far) no curable!! Thanks again for your input. Sandra
  3. 123sandra

    123sandra New Member

    I honestly don't think it's bells!! My mouth doesn't droop
    (yet!!!) Just checked in the mirror!!!
    Lately I've been getting ear-ache with the sensation and went to the Doc's who looked in my ears and gave them the all clear for infection! The sensation only happens on the left-hand side of my face. It goes from under my chin, behind and in-front of my ear and over my left eye-brow.
    I must admit my left side does seem to be weaker than my right and I have the 18 points!!!
    I can't fake my symtoms to the specialist, he nips (yes I did say nip,) my skin and knows where the muscles are worst!! Thanks again for replying. Sandra
  4. kbak

    kbak Member

    Even tho I have CFS with fibro secondary, it is a huge problem, nerve trouble. My right arm has had terrble nerve problem's. I have also had fleeting nerve problem's in other areas of my body, but not the constant trouble I've had in my right arm.

    I've had my r-foot go numb numerous times. Why this happens, I haven't a good explaination for. When dealing with CFS/fibro we have this huge of list of things that are wrong with us. I think a normal person would think it's impossible to have so many things wrong!

    I wish you luck in getting help. I know your health care system is more restricted than ours. There are plenty of people here tho that are having just as difficult a time getting help.
  5. 123sandra

    123sandra New Member

    I honestly don't think the English own Scotland!!
    If you asked a Scotchman he'd say they didn't!!
    Haggis is something I really don't fancy trying especially since it's made in a sheeps' stomach!! Mind you they do say "Don't knock it till you've tried it!!!"
    Tried evening primrose, didn't do anything.
    Will have to hope my Doc recommends I see a Neurologist. Probably be waiting 12months!!!
    Not that easy over here!! Thanks for replying. Sandra
  6. ilovecats94

    ilovecats94 New Member

    You said you have been sleeping 2 feet from a fan for a long time. Being that close and having that air blow on you, could cause the problems you are mentioning. Could you move the fan away or even cut it off for a week and see if you feel better.

    I've had weird problems from having a fan blow on me for extended periods of time at high speeds. I think you'd find that your face and ear, etc. problems are from that. Just my guess...

  7. Mikie

    Mikie Moderator

    I don't know about your face, but the feet sound just like my Mom's non-diabetic periferal neuropathy. She found that walking and keeping her circulation up helped the most. She would sit on the edge of the bed and kick her legs up and down before getting up. She walked in the pool and that helped too. She elevated her feet at least once a day to help with circulation.

    I hope you can see a neurologist. He or she might be of help to you.

    I laughed at your title. We don't care where you are from. We are all in this miserable boat together.

    Love, Mikie
  8. 123sandra

    123sandra New Member

    It's nothing to do with the fan!! The fan is at the bottom of the bed to keep my feet and legs cool!!
    It does it no matter where I am! I went to stay with my mum a couple of weeks ago and she doesn't have a fan!!
    It only started a couple of years ago and I've been using the fan for 10yrs!
  9. 123sandra

    123sandra New Member

    My legs started off when I pregnant over my 2nd child, the Midwife thought the baby was lied on my sciatic(probably spelt wrong!) nerve and that when I had her it would go. It didn't.
    That's how we know I've had FMS for atleast 10 yrs.
    Some other symtoms I started with after the birth of my 1st child. But I did have severe pre-eclampsia and delivered him at 31 weeks! I then got post-natal depression!!
    It's hard being a mum but even harder being a WOMAN!!!
  10. Lurlasgirl

    Lurlasgirl New Member

    I just wanted to let you know that it's quite all right if you're British

  11. 123sandra

    123sandra New Member

    Thanks for not holding my nationality against me!!!
  12. smiffy79

    smiffy79 New Member

    hiya sandra
    have you considered tmj or facial nueralgia? both associated w/fm.
    while you are awaiting your app try one of those cool gel mask things (avon do one) or boots thinking on it.
    i am 26 and have had fm since i was about 8/9 yrsold spent all that time being fobbed off and sent back and forth but luckily now i have a good dr who understands and wants to know more about fm/cfs (i have both).

    your good dr is out there somewhere its just a pest having to be fobbed off and disbelieved.

    where about in the country are you? im east anglia.
    i asked as i had an article (will dig it out) that somewhere here they were rolling out a specially trained fm/cfs nurse in every rhuemy dept.
    if your near (when i find the mag *rolls eyes*) it may be worth a referal?

  13. 123sandra

    123sandra New Member

    That's the 1st time I've heard that one. I have known for years that I grind my teeth when asleep. I had a gum shield made at the dentists but couldn't wear it!! It made mw feel like throwing up!!! Thanks for that one.
  14. 123sandra

    123sandra New Member

    Didn't think there were any more Brits here!! It's a good w/site. First time I've visited anything like this. I actually don't feel like a hypo on here!!
    Am in Lancashire. I only know what my specialist, Dr Freed, has told me about fibro. Some of the terms you and everyone else are using are alien to me. I have just read a paper my mate's fetched me out of her med journal(she's a com nurse)And half of that wasn't in laymens terms!!
    The rheumatlogy Dr I'm supposed to be under is a waste of space. Dr Freed however is another kettle of fish, he's great.He's the one that's made me feel human again!
    I have to be worse before I get to see the other fella and to be quite honest, with his attitude, I don't really want to go back to him!!
    Can't keep up with hte reading of FMS, short term mem is terrible. Nothing sinks in!! Thanks for reply Sandra
  15. 123sandra

    123sandra New Member

    Knew there was a point to my reply to you!
    Can't use gels, have sensitive skin so instead I bought a gel pack that you can warm up or cool down, doesn't work but it was only 99p from Homebargins!!!
  16. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I don't really have any advice, just want to welcome you. I'm pretty foggy today, and I was reading your dentist analogy. Or rather trying to, you know good ole fog and mixing up words and stuff.

    I had to re-read the line "Imagine having an erection at the dentist to make your gum numb..." I was seriously trying hard to take it into context, but it wasn't making much sense. After several reads, I think I figured it out.

  17. taniar

    taniar New Member

    Had hip surgery in Birmingham 2000, and 2001. Had a transfusion. You guys are the greatest!!!

    Daughter works in London. Next year plan to go there again because many of your best doctors are in Britain.

    Have heard great things about Dr. Sarah Myhill. She has a website.

    Great reseacher there: Dr. Raymond Perrin. Look his info up on this site.

    I feel I get swelling in my face. Need to watch my salt intake. However, yours may be neurological. Cannot stress enough to go to a physician who understands this condition.

    Love, Tania
  18. KelB

    KelB New Member

    Can't answer your questions, but just wanted to say Hi, cos I'm a Brit too. There are a few of us here, but we tend to post at different times to the Americans due to the time difference.

    There's loads of really good info about CFS & FM. Good luck with your version of it (everyone seems to have their own personal collection of symptoms!).
  19. cjcookie

    cjcookie New Member

    man on the earth is British. Hugh Laurie!!!!! Oooh, I have a huge crush on him. Those blue eyes, that sense of humor! Did I say I have a huge crush?

    I read an article he had in TV Guide - making fun that he couldn't buy a cane for his role in House in L.A. because no one can be anything but perfect in that city. He had to get the canes in London. Yes, I watch House even though everyone got mad at that show earlier this year.

    By the way, most of our docs are in the dark ages too.
  20. RENA0909

    RENA0909 New Member

    I am from Liverpool and I love this saved my life!You can ask a million questions here and always get an answer.The people are great!

    There are loads of brits on here as you will see.
    I also have bad probs with my feet burning and also with being boiling hot all over which is getting worse for me as time goes by.
    I need to go back to my docs to see what they can do for it.I do think it is neurological and I really have to get some answers as it is driving me insane!
    I feel as though I am going to spontaniously combust soon lol!

    I have guard made by my dentist which I wear sometimes cos my teeth were starting to chip with the grinding.I used to wake up with my face contorted cos I was in so much pain during the night making it feel sore and stiff every morning...sometimes during the day too.Hope you find some answers here .

    Wishing you luck.

    [This Message was Edited on 08/29/2005]
    [This Message was Edited on 08/29/2005]