Anyone out there from South Africa?

Discussion in 'Fibromyalgia Main Forum' started by JudithMary, Sep 25, 2005.

  1. JudithMary

    JudithMary New Member

    Just joined up - I was diagnosed with FM 18 months ago but had symptoms for three years prior to that. Had to leave work as a result.

    I am looking for any other FM sufferers in South Africa, as it seems that we don't have any support groups in this country.

    Having FM puts us all in a lonely and difficult place - support is desperately needed!

    Hope I hear from some of you -

    Keep smiling!!
  2. granny1353

    granny1353 New Member

  3. phoebe1

    phoebe1 New Member

    I'm from SA, I live in Joburg on the west rand, if you click on my username you can see my profile.
    I suggest you also fill out your bio so we can get to know you.
    Welcome to the board, this is where I have learned everything that means something in how to treat and cope with this disease.
    As you probably know, people in our country (even most doctors)are very uneducated about FM and so far behind in treatment protocols it is not funny.
    Many standard treatment protocols in the US, they have never even heard about!

    If I can be of any help or if you want to ask something, feel free, everybody on this board is wonderful and kind and supportive.
    I hope we see more of you.

    Phoebe
  4. rileyearl

    rileyearl New Member

    You are in the right place for support. I found this board in August and have learned so much, made friends and been comforted. I hope that will be your experience.

    I look forward to your posts!

    Take Care!

    Francie
  5. JudithMary

    JudithMary New Member

    Hi Sam - thanks so much for your reply and support. This will be a short message due to slight overuse of back today and now paying the toll!!
    Delighted to hear from members and look forward to learning much more from you all.
    ((( hugs )))

    Judy
  6. JudithMary

    JudithMary New Member

    Hi Judith! now you are not the only one! I generally am called Judy, but thought there might be a few "Judy's" already on the message board!

    Thanks for the welcome and the kind thoughts - so much to learn and hopefully also to share. Would love to know more about you and how you cope.

    As for me, I live in a small village on the Lower South Coast of South Africa - very close to the sea. I am 59, and trying to get used to not having full time employment any more! Keep as busy as possible, except for those dreadful days when nothing works - far too many!

    Will fill in a profile for further info. for all.

    thanks again for writing!

    Judy
  7. JudithMary

    JudithMary New Member

    Hi Francie -

    thanks so much for your reply to my small voice from the African continent!

    It is amazing to read so much personal experience on FM, and it certainly helps to feel part of a team!

    Will be writing more - back ache terminating the time on the computer (poss. result of too much time in the garden today, but worth it!!)

    (((hugs)))

    Judy
  8. JudithMary

    JudithMary New Member

    Hi Pheobe! I don't think I replied to your very welcome note - sorry for delay - great to hear that there is at least one more of us here in South Africa.

    I live in Leisure Bay, which is a very small "dorp" about 30 kms south of Margate on the Lower South Coast. My son, Ben, who is 23, lives in Benoni. I also have dogs - two of my own and one of my partner, David's.

    I had to give up full time work last year, and now do a small amount of estate agency work from home. Not a very reliable source of income, but definitely better than nothing!!

    Are you still working full time? it must be extremely difficult - I did work for about a year before being diagnosed but it was very hard going. I do miss the challenges and company of colleagues, but it is a relief not to have to put a brave face on it day after day!!

    Have you had any luck with any medical professionals in understanding or assisting you with FM? I was diagnosed by Dr. Anderson in Pretoria, whose only advice was to buy a book on the subject and read it! I do go for physiotherapy, but results tend to be shortlived. I have found that Omega-3 supplements do seem to help with fibrofog, and I try do do some form of exercise every day -even if it's only walking the dogs! The worst aspect, in my mind, is the damned unpredictability of the illness. Just when you think it might be on its way out it comes back full force.

    I find it difficult to explain to people that I feel pretty grim most of the time, and I also find that most people don't understand it at all. Especially if you look OK!!

    Well, Phoebe, so glad to have met you and hope that between us we might be able to help any other fellow S.A. sufferers.

    Lots of hugs!

    Judy

  9. pepper

    pepper New Member

    Actually Mary Judith Anne - a very common name back in 1948. Welcome to the board!

    I am surprised that there is so little support in S.A. since Dr. Petrovic treats people there. I tried his program and had great difficulty with it - a massive itch and nausea from the vitamins. But I do know of several people who have improved considerably using his treatment. Have you heard of him?

    Pepper
  10. JudithMary

    JudithMary New Member

    Hi Pepper - thanks for the note. Read your profile - lots of sympathy.

    No I haven't heard of Dr. Petrovic at all - can you give me some guidelines here? Does he actually practice in South Africa?

    As they say... any port in a storm, and it's feeling pretty stormy at the moment!!

    Many thanks -

    Judy
    South AFrica
  11. JuliannaG

    JuliannaG New Member

    Aangename kennis!!!!

    Another S. African here, from Durban. There is another one whose username is Rosaine.

    I don't often come to this board, as I only have access to a computer at work, and can only visit when I am not too busy.

    You're right - there is no support system here for us FMS'ers. I was thinking of trying to start one in Durban, as my doctor says she has quite a few patients with the DD. I don't know if it is a viable option though, as my life is very busy and I don't know if I can handle the extra stress.

    I was also diagnosed about 18 months ago, but had symptoms long before that. In fact, I suspect it was latent forever, but a hysterectomy in Feb. 2000 was the catalyst. Who knows?
  12. Banka8

    Banka8 New Member

    Hi Judith,

    I'm not from South Africa but I'm a Judy. I'll be 53 soon. Too bad you have to have FM but as you can see you are not alone.

    Africa has always been one of my dream vacations. For now all I can do is watch the Travel Channel.

    I just wanted to tell you to do a search on the Marshall Protocol on the immunesupport website. I am on the Marshall Protocol and having improvement. Dr. Marshall has an interview on immunesupport website also so be sure and take a look at it.

    Take care and I wish you good health.

    Judy



  13. phoebe1

    phoebe1 New Member

    I have had this DD for at least 8 years and I have had no luck with doctors, all that happened was that I lost thousands of rands.
    They are extremely backwards in their treatment protocols, and although some of them really wants to help they are not up to date at all with the newest research.

    I recommend the book "What your doctor may not tell you about fibromyalgia" by Dr. Paul St Amand and Claudia Marek, I found it on Kalahari.net.
    It explains the guaifenesin protocol which reverses FM, I order the tablets from this website as it is not available in SA, it is not that expensive.
    Also read through the board and see what other people are doing, that is how I learned the most, you have to be your own advocate in this disease.

    Something else I'm also looking into now is colon irrigation, you can do a search for it on google, I truly believe that for me it would be a step in the right direction.
    If you have trouble sleeping, please read the article in the library by Dr. Paul Cheney on Klonopin (Rivotril in SA).

    I still work full time and yes it is extremely difficult, but I really do not have an option and luckily most days I can cope.
    I don't talk about FM with anyone besides my husband or parents, this is a very lonely road and unfortunately people really don't want to know. I don't even talk about it with my best friends because no-one can truly understand if they don't have it themselves.
    That is why I am so grateful to have found this board, I don't need to talk to anybody else except the friends I have made here.

    Please if there is anything I can do to help let me know!
    Phoebe
  14. JudithMary

    JudithMary New Member

    Hi Phoebe -

    How are you? thanks for the info. - I have indeed read the book and the guafenesin protocol. I thought it would be too complex as the avoidance of foodstuffs or products containing salycite (sp?)seemed to be almost impossible. I also checked on the 'Net and obtained lists of foods etc. to avoid - the list seemed to go on forever!

    I have found that Omega-3 and Evening Primrose Oil supplements have helped the fibrofog a bit. Worth a try.

    I also used to take Rivotril, but it is quite a strong drug and I eventually weaned myself off it. I haven't noticed any significant difference, but it is so difficult to tell with this illness. I have been sleeping reasonably well, still using Molipaxin and amitryptil. I do find I sleep for a long time - 10 hours is normal, whereas I used to be a really early morning person! Of course, it doesn't mean the sleep is the Stage 4 we all so desperately need, but I am fairly happy with my medication at present.

    Last week was a week from hell - absolutely no energy, lots of pain. For the first time on Friday I was weepy and sorry for myself - all that did was give me a worse headache!!!

    Anything else you've tried that seems to work? although each FM sufferer seems to be very individual in their response to drugs or treatments.

    Lucky me - I'm off for a few days to the Natal Midlands with my partner - he'll be doing the trout fishing and I'll be ready with the frying pan!!

    Lots of hugs -

    Judy
  15. JudithMary

    JudithMary New Member

    Thanks for the contact - I thought I had replied to you but can't see it anywhere - typical!! had a look at your profile - impressive snakes!

    I think that it would be a splendid idea to form some sort of support group here - we must give it some thought.

    Your life sounds very hectic - it must be extremely difficult coping with your sons and not being well.

    My FM might have been triggered by bronchial pneumonia plus a very stressful job - who knows? not much point in trying to work it out, rather try to deal with it!

    Last week was a bad one, but feel that it might be lifting a bit now. Do you manage to get time off work when you are really sick, or are you still able to cope at present?

    I too am a baby boomer - end of last war celebration, I think! I am English and moved here about 23 years ago. Still miss the UK quite a bit, but not the weather!!

    Hope to hear from you again - haven't yet posted a profile, but will do so soon.

    Lots of hugs

    Judy
  16. Fibrotears

    Fibrotears New Member

    Hi!

    I'm a South African also, living in Wellington, Western Cape.

    My username is Fibrotears but my actual name is Anja.

    Fibrotears
  17. phoebe1

    phoebe1 New Member

    Judith, are you still on vacation? :)
    I went for a colonic today (also doing a 6 day fast)and the scary "things" that came out was just unbelievable, I still have 4 to go and hopefully will feel a very significant difference then.
    If you have not considered this then read up on google, I certainly think it is worth a try.

    The guai protocol is not that difficult, it looks worse than it is, the only thing I had to order from the board was toothpaste because nowhere in this entire country could I find mint-free toothpaste.

    Phoebe
    [This Message was Edited on 10/17/2005]
  18. JudithMary

    JudithMary New Member

    Hi Anja! so pleased to hear of another South African - lucky you, living in The Cape!

    You didn't mention anything about FM - are you also one of the FMily? how are you doing?

    Phoebe from Johannesburg has lots of good advice on this site. I am learning as I go along - mostly how to deal with "how can you be sick - you look fine" comments! Having had to leave my full time job and deal with a major lifestyle change, I am surprised they even ask!

    Pain is invisible to others: I have tried to find a middle path where I can explain my limitations and discomfort without sounding as if I am moaning!!

    Any comments from you? would love to hear more - we South Africans need to get some form of support group going, and this is at least a start!!

    hugs

    Judy
  19. JoFMS

    JoFMS New Member

    Hi,

    I'm originally from England but moved to SA 6 months ago, had fibro for 3 and a hlaf yrs but only diagnosed in June, I live in the Limpop Province (northern).

    Would be great to hear form anyone else in SA or if they know of any support groups? Maybe I should start my own if theres anyone else out there???