I need some help

Discussion in 'Fibromyalgia Main Forum' started by mum22, May 23, 2009.

  1. mum22

    mum22 New Member

    I have just been diagnosed with FM and I really don't knw where to go from here. I was recomended this site by a friend who also has FM but I have to many questions just to ask her. I have felt unwell now for two years and am at the moment waiting to get another job with the NHS (I stay in Scotland). I am a nurse well I was till last year as I now can't do the job. I use either one or two walking sticks at all times. I am so tired all the time but I never give in. I try and not sit down to long through the day as I know I won't get up again. I have two children 8 and 4. I use a chair when I am out when I get one as I can't manage to get roung the shops all day. My meds are so much I can't keep up with them all I take Paracetamol x 8 Diclofanic x 2 Tramadol x 8 dihydracodine x 2 and when thing get so bad I take Morphine. Now I need a few things answered for me if you can. Will I get any better or will things get worse. Also do you have any tips on how I can reduce my meds without causing increased pain. I have read on here that diet helps could someone tell me what I should be doing I just want to get my life better and back I want to enjoy a day out with my kids without sitting in the car for the afternoon while they go with there dad. I am so tired of feeling like this I either want to live my life just like everyone else or just finish it all. I am sorry for going on but I really want my life back I know I have to reduce the stress levels but that can't happen at the moment. I just want this to all go away.

    I should say that I am so glad that I have found this site but I really do wish that I didn't need it. I am a 41 woman who feels as if life has just finished for her with a young family.

  2. AuntTammie

    AuntTammie New Member

    First of all, I am sorry that you are struggling....getting this diagnosis is never fun, to say the least.....that said, you did come to a great place for support and info. There are a lot of wonderful people here.

    As to what works, unfortunately, a lot of it is trial and error, and though there are many similarities between us, there are also a lot of individual differences. Many of us cannot tolerate meds at all and try to use supplements and alternative treatments; however, some do use the meds and have had good results from them. Many have changed their diets, but what works in this regard also varies. A lot of people do find that reducing their intake of carbs (esp simple, high glycemic carbs) seems to help, esp with the pain and energy levels. Many have also found that eliminating gluten helps. And, Candida is a debated topic in the medical world, but many docs believe that many of us have a problem with it, and so going on a Candida diet could also be helpful.

    The problem is that if one were to eliminate every food that could or has caused a problem for some of us, there wouldn't be anything left to eat. This might sound discouraging and overwhelming, and it can be, but the good news is that many of these things are recommended bc they HAVE been shown to help many people. So, there is hope. It can be frustrating figuring out what will help you, but it is possible. Once you do, you probably will not get completely well (for most, this is a chronic lifelong illness), but you can hope to see improvement. Some people go into remission and some do get well, but most experience fluctuations in how they feel.

    What I would do to try to learn more, if I were you, is to just read a lot.....read what others have written on here, read other informative sites (but don't believe the ones that say that this is not real - there are many studies that have proven how very real this diagnosis is), get pro-heath's weekly newsletters for FM and ME, search this site for specific topics (the search feature on here is weird, though....when you search it will say that there is nothing found, but then on the rt side of the screen it will list recent searches....click on those and the topic you are looking for should come up)....actually I posted a topic about food awhile back - I think i called it what is safe (or something like that)....it listed a lot of foods that some of us avoid and why, and asked for suggestions of what is actually ok to eat......while it was a little discouraging to me, it also was helpful to list things bc it gave me ideas of where to start (in other words, I wouldn't go and eliminate every food on the list, but might start at the top and try one thing at a time and see if it helps or not)....try searching foods, candida, yeast, gluten, carbs, etc, on this site and you should get some ideas

    anyway, I am sorry this got so long.....I was just trying to give a bunch of ideas, so that you have some choices as to where to start....try to be patient, though, and take it one thing at a time (that's really the only way to know what helps anyway)....and try to aim for balance (going to extremes does not seem to be very helpful)
  3. 3gs

    3gs New Member

    Hi Michele and sadly welcome.

    Do you have just Fibro or CFS too? Besides pain and fatigue do you have other symptoms? Not sure about your meds other than hydracondine)lortab?) and Tramadol.

    Do you know what your vitd levels are? I take vitd-b12-calcium with magniseum and many others. grapeseed extract. Also Lortab. The biggest key is to rest as much as possible and avoiding stress(!).

    Some people do get worse and progress,others stay where that at if they manage thier symptoms well. Its hard to say because everyone is different.

    Read as much as you can on here there is very good info. I understand what you are going through and how rough it must be with young children,my heart goes out to you.

    could you break your post up? many people have trouble reading posts that are long with no breaks. also the board is a little slow on wkends and its a holiday so dont be discouraged if it takes awhile to get reponses.

    sadly this is a disease that does not go away. The best info I think is for you not to push past what your bodies limit is,this will only make it worse.

    cyber hugs-jenny
  4. Pansygirl

    Pansygirl New Member

    a warm welcome to you, sorry you are going through this with young children.

    You have come to a wonderful site that has caring people that understand what
    you are going through.

    I have fibro and was diagnosed summer of 2008. I have 2 kids age 12 /16 and even though
    they are older than yours it still makes it hard for me to rest like I should.

    I agree read , read and research , because we know how we feel and we must be our own
    advocate. I really really wish fibro would go away but for most of us it doesn't.

    The two things that make my fibro worse are stress and overdoing and going past what my body can do now. I've learned the hard way to listen to my body . I also do much better
    if when I am busy with the kids if I take the time to rest and sit often.

    Our family has worked on eating healthier since I've been diagnosed with fibro~ I havne't
    seen a change yet but at least I feel we are on the right track.

    Please do rest when you can. Rest and drink lots of water. Vitamins like someone else mentioned are very important to take.

    I am 44 so close to your age. I also take tramadol and this does help with my pain but the pain is never truly gone. But the tramadol does help me to function.

    make things around the house easier for yourself. make the meals simpler if possible. I also have my husband help with meals when he can and that is a huge help for me.

    You are special , your life is precious ~ As I'm learning you need to make adjustments to what
    you do each day but each new day brings hope.

    Gentle hugs, Susan

    [This Message was Edited on 05/23/2009]
  5. PVLady

    PVLady New Member

    Welcome to this board. I came here many years ago so sick it is hard to even imagine. I had progressed to the point I would go weeks housebound. At the time, hardly any doctor had even heard of fibromyalgia and most who did just laughed about it.

    I went through many doctors until I finally went to my mom's pain specialist. Dr. Chavez in Redondo Beach, CA was my lifesaver and I am happy to share what helped me. Like you, I was using various pain meds to help control the pain and try to live.

    I had started a business in 1996 and looking back, I will say, there may times I was working from bed while on a heating pad. Anyway, about 5 years ago I went to Dr. Chavez and asked him to help me get off MS Contin. I had been on it for 9 months and was quickly realizing I was developing tolerance which required I increase the dose. In my case this was disastrous because I had undiagnosed gallstones. I was loaded with them. When I took the MS Contin, for the 9 months, I had no appetite and many other terrible symptoms - severe constipation, nausea, on and on.

    Anyway, Dr. Chavez put me on a drug called Buprenorphrine or Subutex. This drug is typically used to prevent withdrawal symptoms when you stop opiates. I was taking it to get off he MS Contin. I discovered another us for Subutex was pain management. It works similar to opiates but on fewer receptors in your brain. In addition, with Subutex, you do not develop tolerance - they say "less is more".

    After being on Subutex for a few weeks when I stopped the MS Contin I began to realize my aching had stopped. For the first time in many years I did not have pain. I did not want to be hopeful but as it turned out, I never had to go back to regular pain meds. I have been on the same dose of Subutex for about 5 years now. You actually disolve Subutex under your tongue.

    Dr. Chavez has alot of fibro patients who are on Subutex and doing well as I am. I am sorry more doctors are not aware of the benefit of this drug. It is like we are in the dark ages as far as pain treatment. It is unbelievable but the only drug I take is Subutex (16 mg day) and 1-2 Tylenol. I never had another day in bed after starting it.

    If you are ever interested in discussing the Subutex protocol to perhaps discuss with your doctor, you could always call Dr. (Rick) Chavez's office. He is like a saint to me. This man only treats pain patients and is a internist, not anesthesiologist. He also has a degree in psychology so he always is so considerate and really listens. He gave me my life back.

    I will say, for me, nothing in the world helped me, as far as diet, supplements. I battled this for over 15 years in severe pain before finding the drug to really help. The other good thing about Subutex, besides no tolerance, is you have no feelings of being high, drowsy, etc. Also, no side effects like constipation, nausea, etc.

    The other thing I discovered many years ago was I had a very high level of the Epstein Barr Virus - like over 8,000 when the normal is below 90!! I know I will deal with the forever.

    Lastly, in 2006 I discovered I was loaded with gallstones. I am not sure if that also played a part in my pain, but it didn't help.

    I wish you the best and pray you find answers. If you have any digestive problems, make sure to be checked for gallstones. There are many conditions that cause referred pain. I had surgery in 2006.

  6. mum22

    mum22 New Member

    Form what I have read so far I have landed on my feet the first thing I know I have to do is get my Vit-D levels sorted out I didn't know that could make me feel worse if they are low. If nothing else I have learned that.

    PV Lady I would love to phone you doc but unfortunately as I stay in the UK and I am surviving on very little money I couldn't affored the phone call to him I know this much If I could afford it I would be calling him even with the time diffrence as I am up most nights.

    I am going to have a look at some of the diet things that are written here I am sure going to have my work cut out for me.

    Also with the Fibro I have diabeties asthma and IBS but I can control all of them except the Fibro I really don't know why I am giving it a capital letter I have just started with this rotten thing and I want it gone.

    You have all been so good taking your time to ans my post and my thanks goes out to you all.

    Before I posted I did read a few posts but I am now going to read lots more as I wan to know all about this thing that I have so I am equipt to get on with my life not just to survive it