New to Board-not diagnosed YET!!!

Discussion in 'Fibromyalgia Main Forum' started by joyster, Nov 7, 2005.

  1. joyster

    joyster New Member

    I would like to know if anyone has a long period of time that symptoms are very minor of pretty much non existent? I have those long periods then a flare up knocks me for a loop. I have severe headache, horrible fatigue nd brain fog. And it seems like all my joints are sore with my right calf swelling. I have been to rheumatologists and the only diagnosis is some form of asthritis. I was put on Asulphazine(I think maybe spelled wrong) and ended up in the hospital--sulpha allergy....so I just stopped going to dr. I was told all the medications that he would use on me would contain some kind a sulpha. Not sure where to go from here...Any suggestions...
  2. JLH

    JLH New Member

    Welcome to our board/support group. Glad you found us!

    If I were you, I think I would be getting a second opinion from another doctor. You must have some type of arthritis as well as fibro. There are meds that could help you feel better.

    For the fibro, I am on Cymbalta, Neurotin, and Zanaflex.


    Hugs,
    Janet

    P.S. Sorry for such a short answer, but I am not doing well today and want to check out the board to see what's going on, I just can't stay long![This Message was Edited on 11/07/2005]
  3. shep

    shep New Member

    Welcome Joy,
    You have found a wonderful place to find out information to help you decide what to do to help youself.

    This site is full of wonderful people that have lots of informaton and lots of understanding and love for fellow fibromyalgia friends.

    Shep (female)
  4. shelbo

    shelbo New Member

    Nice to meet you! I'm sure you'll love it here! You will learn so much. Every body here is so nice and helpful! You can even search back through messages by subject so if, for example, you want to do a search on chronic headaches you can do a title search and put in something like 'headaches' or 'daily headaches' and you will get a list as long as you arm usually...or say, for example, you've heard a particular supplement or diet is good you can see what people who've tried it here think by doing the same thing, only this time putting in the name of the supplement or diet. That's what the 'Search' box is there for. You can even search by username if you know that a particular member has written a lot on a subject you're interested in reading up on.

    It is a struggle to deal with what we have! Try to get a diagnosis as soon as you can. I think that what you describe resonates with many of us here. A lot of us seem to have semi-remissions, even sometimes for years at a time, only for all the symptoms to come back with a vengeance, worse in some cases! Our symptoms seem to ebb and flow and in most cases it's virtually impossible to know why we are having a particularly good or bad spell.

    Some here have had tremendous luck with dietary changes, certain supplements etc. One member here had good luck with a homeopathic remedy for her muscle and joint pain. If I can find her post...I will bump it up for you to see. You will recognise it by the fact she puts the word LOUD in capitals...it called something like 'I cannot say this LOUD enough'. This remedy has almost eradicated completely her muscle and joint pain. So, that might be worth looking in to.

    I think what you have to remember is there is no 'one size fits all' approach with CFS/ ME or Fibro. What helps one may not help another but I am of the opinion that one should 'first do no harm' in treating our conditions...so I'd exhaust natural avenues first like diet, for example, as some medications are more damaging to us....there can be side-effects listed on some meds that go on and on and we tend not to tolerate meds too well anyway, esp those of us who seem to react to lots of foods and environmental allergens. Saying that, there are many here who couldn't make it through the day without pain meds...we are all different. Just exercise caution if you are prescribed something, that's all I'd say - it's really about trial and error in finding what works for you! I do not react well to meds at all.

    What is your diet like? I am reading a lot about the PH diet which emphasises lots of green veggies, and lots of veggies in general, low in fruit (lemon and lime is allowed, I believe), some fish and good grains like quinoa, amaranth, millet, brown rice. The aim is to get your body into an alkaline state (disease apparently thrives in an acidic body) by eating 70% - 80% alkaline-producing foods to 20% - 30% acid-producing foods. You can do a search on here or the web for PH diet. I think this kind of diet has helped many of us...I'm just about to embark on it! All animal produce is acid-producing in the body as is fish...and nearly all veg is alkaline-producing in the body. Search for the acid/alkaline list as some foods you think would be forbidden aren't and vice versa. I intend to buy something called supergreens...which contains a natural plant chemical called chlorophyll which helps to bring the body into an alkaline state..you just mix it in water and drink several times a day. All junk food, choc, processed food is out...only natural, wholesome food is out! Protein should be from fish and organic meat, eggs if you can afford it! Lots of water should be drunk and you can make it more alkaline by squeezing fresh lemon or lime into it! This is good first thing in the morning :) Drink lots of water but not during meal or a half an hour either side!

    When you feel good, though tempting, try not to overdo things. There is a cycle of boom and bust with our ailments...a key is to rest everytime you do something. We have to see ourselves as a quarter-full jug...we don't have full jugs like fully fit people do so we need to re-fill our jugs by resting every time we do something and use up our limited energy supply.

    Well, sorry to bore you so long! BTW, do you have daily headaches...I do, it's a killer!!

    I truly hope you love it here and find answers the many questions that are no doubt circulating in your head!

    Love Shelbo
  5. shelbo

    shelbo New Member

    It's by Chocolat and it's called I can not say this LOUD enough! Hope this helps, Love Shelbo
  6. shelbo

    shelbo New Member

  7. shelbo

    shelbo New Member