HELP!!! Newly diagnosed and having a hard time coping

Discussion in 'Fibromyalgia Main Forum' started by IGLuv, Jan 9, 2006.

  1. IGLuv

    IGLuv New Member

    Any advice? I have been suffering from FMS, CFS, and CMP for about 8 months now, I was officially diagnosed about 2 months ago now, and I'm really struggling with it. The IBS I'm having a really hard time keeping in check, and the fibrofog is very hard for me, I use to be a runner, I use to be on top of my game, now I have a hard time even going up the stairs without help most days!!! I'm only 20 years old, is there any hope that I'll get control of this? Currently I'm taking Flexaril, Vicadin on the days the pain is really bad, Lexipro, Magnesium, and Seraquel to help me sleep, but so far all that seems to be working is the Seraquel, it does help me sleep, but nothing I've tried has helped with the pain or the IBS at all!!! I want to get this under control and get my life back!!! I've tried acupuncture, that only made the pain worse, as did the chiropracter. Any advice?
    [This Message was Edited on 01/09/2006]
  2. IGLuv

    IGLuv New Member

    Thank you for your warm welcome!
  3. hopeful4

    hopeful4 New Member

    Hi Igluv,
    And a warm welcome to you! So sorry that you had to join us...but this board is a life-saver!

    At 20, this must be especially difficult for you, at a time in life when you're supposed to become independent. Just take a deep breath.

    My first recommendation, is to never give up, and know that there is hope.

    My second recommendation is to educate yourself as much as possible about your conditions CFIDS/FM/CMP/IBS. You can find a lot of info under the "Library" tab, and on the internet.

    A book that helped me a great deal was: "Chronic Fatigue, Fibromyalgia, and Lyme Disease" by Burton Goldberg.

    An FM book that is highly recommended at my support group is: "Fibromyalgia & Chronic Myofascial Pain" by Devlin Starlanyl.

    You can probably get these at your library to see if they are helpful to you.

    There really are no easy answers, each one of us is an individual. I'm 56, was DX (diagnosed) in 2000 w/CFIDS. Have tried many therapies, meds, supplements, etc.

    Now I'm being treated at the Fibromyalgia and Fatigue Centers. They have about 10-12 centers around the country. Their website is fibroandfatigue dot com. Many on this board are finding help there.

    They do extensive testing like I've never, ever had before...not even when I had breast cancer! They specifically look for underlying causes such as hormone imbalances, thyroid, infections, viruses, immune system function, etc.

    They finally got to the root of my illness: Lyme Disease. I would have gone on and on because no one else was looking for this. Now I can receive the proper treatment.

    OK, I've rambled and soap-boxed enough. Just wishing you the very best as you look for the answers to your health.

    Take care,
    Hopeful4
  4. CarolK

    CarolK New Member

    NEVER LOOSE HOPE AND NEVER GIVE UP!

    I know it may seem overwhelming at times... but there is always a way to work through whatever your day is handing to you!

    Yes, it seems the list of symptoms is endless, and what remedy works for one will possibly not work for another... but don't stop learning, don't stop asking questions of your doctors or people on this message board.

    Keep at it until you find the right combination of things that works best for you. This board also helps with those days that are so very frustrating for us... you will find lots of love... encouragement... helpful hints... tons of information in the library here... and even people willing to pray for you when you are having a particularly hard day!!

    So keep coming back again and again. Post often and you will get lots of help... sometimes the people here are more knowledgeable than our doctors!!

    So welcome aboard and know that you are an important part of this board!

    Blessings to you... CarolK
  5. IGLuv

    IGLuv New Member

    Thank you so much to all have replied, if nothing else it's given me alot of hope! I'll have to go to the health food store and look for those pillows, I'm willing to give darn near anything a try!!!! I think mostly what I needed was someone who understood what it was like, especially on the bad days!!! My friends and family try to help, and I'm fortunate enough to have a couple of chronically ill friends-One with Chrons disease(SP?) and one with Luke Ericks disease. While they don't understand specifically what I'm going through, they're a big support!
  6. yuckie

    yuckie New Member

    I have the same diagnosis that you do (all of them). I found that it is critical that you get the IBS under control. Otherwise you are not getting proper nutrition and are susceptible to leaky gut which will just continue to pour toxins into your system. Many cases of IBS are brought under control through diet modification. I had blood test that identified my food sensitivities. When I eliminated those foods, my IBS was resolved. The test was done by an ND and sent out to a lab. My sensitivities are wheat, yeast, dairy, citrus, eggs, corn, soy. These are really common. The test was about $400 but instead of the test you can do your own food sensitivity testing. Devin Starlanyl talks about this in her book Fibromyalgia and Chronic Myofascial Pain. I noticed one of the other posters mentioned this book also. It is a very good book.

    Take one day at a time and always look for something good to focus on. Even though your accustomed to high performance, try and modify your perception of what that is. Go easy on yourself and your body. Ok? Janice
  7. chopindog

    chopindog New Member

    I have been sick now for a little over a year, I was 27 when I became ill. This web board is truly helpfull! There are people on here who know more than your doctors could even dream to know about this DD. I think the best advice I can give is to learn from the begining not to over do yourself! If you push yourself to far you will know it because the pain will get much worse and you will end up in bed for a long time. You have to learn to gage what is too much. I would say listen closely to your body! If it seems to be saying STOP, Than do exactly as it says!

    If you have noticed that if you have been standing or sitting for a while and you begin to get very dizzy and naseated, sweaty and light headed, lay down!! Many of us have what is called orthostatic intolerance, also called nuerally mediated hypotension. What this means is that when you are sitting or standing for to long your blood pressure drops and leaves you very ill. The blood can't get to your brain and other vital organs. The faster you lay down the less negative reprocutions you will have.

    From the literature I have read, they say that your chance for recovery is much larger if you seek well educated therapy as quickly as possible.

    Do not waste you time on Doctors who don't know much about the illness! Search for a doctor who believes and knows how to treat this disease. I think your best bet is to see a doctor who only treats CFIDS, FM, IBS Etc. These illnesses are far to complex for a regular doctor to keep up on new research and know what tests need to be drawn and how to read the results specifically for this disease.

    You need to find a doctor that does a holistic approach to the disease. Who treats not only the symptoms. but finds out what is causing your symptoms and attacks them with everything possible.

    You have to educate yourself and become very proactive!! If the health care provider only seems to know a little about the illness then do not waste your money or time on them!!

    I hope you get some good help and get better!! Good luck! and remember, research research research!!!!!
  8. IGLuv

    IGLuv New Member

    I've just purchase a couple books off of Amazon.com that where recommended here, I can't wait for them to arrive so I can do some more research! I figure my diet is a big part of my problem, I've tried cutting out alot of things, but so far I haven't found which one(s) are the cause. For a while my Dr. put me on the BRAT diet(Bread, rice, apples, and tea), but it wasn't much help, I even bought glueton free bread! But I'm not defeated yet! I've noticed stress tends to trigger the IBS big time, so I try very hard to keep my stress levels down. I also try to avoid sugar as much as I can and artificial stuff all together, it helps a little, but so far it hasn't kept it under control. I'm actually going to a neurologist right now who's helped more then anything else I've tried, but it still doesn't bring me much relief! Alot of people have suggested I try a Rheumatologist, I think that'll be my next move......I'll also have to visit those websites and see if I can find a Dr. who's more specialized in my diseases!!! And now that you mention it, I do tend to get light headed after standing/sitting for very long, I had no idea that could be part of this too! I'll definatly take your advice and lay down as soon as I notice that happening, thank you so much for all the good tips![This Message was Edited on 01/09/2006]