Just diagnosed with fibro...need advice pls??

Discussion in 'Fibromyalgia Main Forum' started by babyboysx2, Nov 29, 2011.

  1. babyboysx2

    babyboysx2 New Member


    I was just diagnosed with fibro today and Im alittle overwhelmed...I have had a migraine for over 3months every single day, pain everywhere,so tired. I ve tried numerous fibro meds...lyrica, cymbalta ect, migraine meds, frova, hydromorphone (worked but my fam doc wouldn't continue it hospital perscribed), amitriptaline ect?? (i think its called that). Ive tried percocet 2x a day and it helps but my doc wont perscribe this either, I now have to go on a waiting list for a pain clinic but may have to wait up to 2yrs!!!! I really would love to know what has worked and if anyone eles has found that percocet works for their fibro symptoms? Can barley get my kids to school let alone clean my house, ive never imagined my life to come to this. Im only 27yrs old and feel like my life is over...to think have to live the next 40 yrs like this is mind boggling..i cried my eyes out today when i found out. I am fighting for ODSP because I cant work they denied me but i never had the diagnosis for fibro till today. My hearing to appeal it is in March 2012 and if there is anybody on here from ontario canada that would know about this disability program and if fibromyagia is considered a disability, info would be so greatly appreciated. Anybody who has this advice is soooo needed:)
  2. Mikie

    Mikie Moderator

    But doesn't work for everyone (what does?) is the Guaifenesin Protocol. If you get the book, "What Your Doctor May Not Tell You About Fibromyalgia," by Dr. St. Amand, you can find a lot of good info on FMS. His treatment is an off-label use of Guaifenesin, the active ingredient in Mucinex. This is not an easy treatment and it takes commitment and patience but it got me off of Morphine and/or Vicodin. Understanding Dr. St. Amand's theory and treatment can seem a bit overwhelming at first; I had to read through it twice. I just figured I had nothing to lose by trying it and am so glad I did. The pure Guai is sold here and is cheaper than buying Mucinex.

    I think this treatment works for additional reasons than those theorized by the good doc but, for me, what is important is that it works. The protocol has to be followed to the letter in the beginning or it may now work so it is important to follow it religiously. Even if you decide not to do the treatment, you will learn a lot from the book.

    I hope you can find relief from your pain. The good people here are very generous in sharing what has helped them. Everything which has helped me to cope with FMS, CFIDS/ME, Sjogren's Syndrome and intersticial cystitis is something I first learned of here. Good luck.

    Love, Mikie
  3. luigi21

    luigi21 Member

    hi babyboysx2 sorry to hear your've been diagnosed fibro, do you know what triggered it?
    i had pre-existing fibro, became full blown after whiplash injury when i was 30, took me two years and alot of of sarcasm from my doctor before he referred me to rheumy. im 37 now

    i stayed a way from medication for first two years and, for me, it was hell.

    i came to a place where i gave up, so i decided to try the medication, prefering the idea of having some life to a painful existance. Anyway, yeah amitripyline is used in fibro its an antidepressant, but lack of serotonin can increase pain sensitivity, and as this is a pain centralisation problem, (our brains tell our bodies we are in constant pain, and things that are not painful for most people are for us, this is because substance P, which is the fluid in spinal cord is higher in fibro's than normal people) also there are a lack of other hormones and chemicals in fibro noratripyline also which amitripyline contains, usually only given at low dose, to help dampen pain and help with insomina.

    there are also other medications on offer, i used gabapentin (neurotin) for a while, thats an anti epilespy drug it dampens down the excited nerves my working on the chemical GABA, again also a defect found in fibro, i found that quite good for about 3 years, but i had to keep increasing dose until the side effects outweighed the benefit.

    baclofen is another one used, its for cerebal palsy and MS, but again used with same idea in mind, to calm down muscle spasm, (i still use this now and again).

    Emm... im at the moment on same as you amitripyline, but also co-codamol when pain is bad, and diazepam because i suffer bad muscle spasms it also helps with sleep but only 5mg dose should really be taken at night, or occasionally because very addictive. i also take losec for acid reflux, buscopan for ibs, all par for the course with fibro, new symptoms crop up all the time, although its not a progressive illness it often feels that way.

    ive tried lyrica, didn't get on with it, ive also tried the SSRi' and SSni (antidepressants) but didn't get on with them side effects like anxiety for me, but some people have took them and felt better for it. ive tried the dopamine antagonists (again another chemical lacking in fibro) but didnt get on with that. So your roughly make your way through the meds and work out whats best for you, none are great, but at least take the edge off things, truly for me, my fibro pain so bad it was a choice between drugs and some relief so i could function, or not function and get depressed.

    I take migraine meds stemetil, good for the dizzys and nausea.

    Heat is excellent, get a wheat bag you heat up in microwave or an electric heat pad, or water bottles. can also have warm bath, but it relaxes the muscle contractions. massage is good, can use a small rubber ball placed between yourself and the wall to massage your body by rolling the ball between the wall and your body (putting the ball about the size of a squash ball in a stocking or sock stops you from keep droppng it) if you can afford it a shiatsu massage pad is useful, or get partner to give you one if you have one.

    never exercise or stretch without warming up your muscles and massaging out any tight knotted muscle, stretching an already tight muscle will make the spasms worse. Tens machines worked for a few years for me, im looking into the alpha stim another electrical device.

    eating protein good idea, since protein is what are cells are made up off, need to eat it to help cell regeneration. also any injuries take longer to heal because we lack stage four deep restorative sleep when the body heals itself, so some people use melatonin to help with sleep, but always check with doctor because some medication cannot be mixed with others, or some herbal stuff.

    light exercise, like a short walk, then building it up, take painkillers if have to just so you can build muscle and stamina up, because weak muscles make more pain. then pilates ball exercise is quite good, nothing too strenous and the ball is great with stretches. after you can apply more heat, or some prefer a topical cold treatment like one that contains, menthol, peppermint, or best of all camphor oil.

    journalling is a great way to deal with your emotions around this illness, and thats important because fibro affects the limbic centre another name for this part of the brain is called the 'emotional brain.' Makes lists so you dont forget things, or set the reminder on your mobile.

    meditation is good, need to relax the mind so it gives it a break from its fight of flight response.

    you do suffer pain and insomina and fatigue, but it can vary in degrees from day to day, week to week, year to year. the good days hold on to them through the bad, they pass to good days. It is hard because we have a before diagnosis life, and after diagnosis life. best thing is to come chat on here when struggling because we will understand, family members are not so understanding unless you have a limb missing!

    Try and take things a day at a time. Pacing is the key, (although i dont think any of us do it, we sure try to make up for things on our good days). but innevitably end up paying for it.

    eat well, most food has got all the nutritional value, but supplements what this site is all about, i know some people take magnesium and selenium (help with muscle contraction and nerves) , calcium and vit d supplements, but always check with your doctor because they can interact with prescription meds.

    Your not alone, i had the worse year ever this year, although i had alot of outside stresses, and we are told to avoid stress as our autonomic nervous system is already switched on 24/7 ie fight of flight. but some days ive taken the dog out and had a really nice day, others ive looked into the future been having a bad day and thought i cannot stand it. so just always think if your having a bad time, it will pass. you must start asking for help when you need it especially when you have children, get some fibro leaflets and leave them about so people can read, often they will if they are just there on the table, or better still IN THE TOILET, you know when people are on the throne they are always looking for something to read! as for pacing, i stopped ironing my bed sheets, ironed my clothes as i wore them, and basically looked at jobs i could reduce. keep in touch x
  4. luigi21

    luigi21 Member

    right me again, i've just looked up percocet because american names for drugs are different to englands. right it contains oxycodone which is an opoid and paracetamol, opoid related to that quite addictive family of drugs, however they do help in severe and moderate pain, and it contains Acetamionphen, which is also a painkiller, similar to ibruprofen family but less corrosive on the stomach, and usually used for pain and inflammation. right, in england they dont really prescibe oxycodone, it is a strong medication to start off with, the others that ive written may be better because they are less addictive and not such a strong med to start off on, what im trying to say is any painkiller you take with fibro will become less affective as the body gets use to it, and fibro pain is relentless. i take co-codamol, that is also related to the opoid family because it contains codeine, any tablet with co in it has codeine, mine also contains paracetamol, what i do is usually only use this drug when im in severe pain, and at night, because using this type of drug 24/7 over many years slows the bowel down and can have consequences i suffer constipation ulcers in my colon now and have to take powder that helps the bowel so long term constant use i wouldnt recommend. so i'd try one of the others, tramadol is another one i forgot to mention it is a longer acting drug one tablet taken lasts 12hrs however that didnt work for me. i use the stronger meds on bad days so i can function and keep up my exercises, i then reduce it on the better days or weeks, maybe even months or years, im not saying your free from pain but you will recognise the better days compared to the flare days. Some people cant take prescription meds because some of us are more susceptable to allergy since our ammune systems are comprised due to lack of decent sleep. although we have lower ammunities fibro is not classed as an autoimmune disease. instead of the antidepressants some try 5htp, i haven't as of yet, but it helps turn a chemical into serotonin and melotonin in the brain, it is available in herbal shops, maybe even on this site, but do not take this drug if your already on an antidepressant or your be susceptable to serotonin syndrome.
    Try not to pick up your children, you didnt mention theiir ages, but if they are young enough to still be picked up avoid, and bring yourself down to there level to hug them, im telling you this from experience, heavy lifting either that of children or shopping aggravates pain and muscle spasm. you can do your shopping in short bursts instead of massive shopping loads, well unless you have someone to carry bags for you. your also tend to suffer more pain on your dominant side. and try to avoid too much repetative movements as this can aggravate muscle spasm. i had to give up the guitar.

    anyhow yes you can manage this thing, take a day at a time
  5. babyboysx2

    babyboysx2 New Member

    Thank you for the advice Jaminhealth....I will have to try this mantra...should i try this thyroid stuff even if I dont have a prob with it?. Ive had my thyroid tested for years but ive never had a problem, i just cannot seem to gain weight. Im lucky if I can stay over 100lbs. This is what everyone(befor my diagnosis) seems to think what was wrong with me. I cannot begin to count the times plp have said to me if you gain some weight maybe you'll look and feel more healthy. I do take a multi-vitamin and buy organic product for my children and myself when its resonably priced.
    I had what i would say was a minor car accident in 2008, never fully recovered but had to move on with life because my son was just a small baby.Went on to finish school but was suffering with what i knew was more than after pain caused by a accident. I eventually graduated (god only knows how) got a job in my field...separated from my husband and a week later in sept of 2010 i broke my tailbone and honestly have gone down hill from there. I guess i would have to say it was a little both emotional and physical trauma. I suspect ive had it since childhood but ill never know. I remember having back problems since i was 10! Thanks again for the adivice and wish you all the best!:)
  6. babyboysx2

    babyboysx2 New Member

    hi, i actually am halfway through this book and really wondered if it really works! So happy to know it works for you, it does sound like it would take alot of commitment but if it helps get through the daily tortuous living of this condition it would be sooo worth it! Ill have to reread it now that I got a diagnosis, and actually make it sink in lol.(my neighbor gave me the book and told me she knew i had this problem as her mom did and to read them because it helped her mom)

    It sounds like you have alot on your plate and from the bottom of my heart wish you all the best. This fibro is bad enough for me could not imagin having more problems on top of this to deal with:( take care!