Fibromyalgia

I was told by my pain managment doctor that i had fibro and that i needed to take topomax for it. I was told that fibro can cause all these other conditions like chest pain back pain and basically pain all over. I constantly feel like crap and dont ever feel like i am going to get better. I push myself everyday and want to know if there is anything that i can do to help this.

I am only 33 with a 10 year old daughter and want to be able to get back to doing what i used to be able to do with her.

8 Replies

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  • Hi there, I'm sure there will be far more qualified people along soon to advise you, but I just wanted to say I really sympathise with your situation and that I know how difficult it can be to get medical professionals to take you seriously. The only way that I have personally found a way forward is to accept that no one is going to bring the cure to your door (unless you're really lucky) and get going with your own research. Use Dr Google! There's a massive community of pain sufferers out there who you might be able to identify with symptom-wise, always worth looking in to alternative therapies too. Wish you lots of luck, Toni x

  • no one wants to help me. They always want me to go see different doctors or try new pain meds and at this point i can not afford to keep going to different doctors and continue to buy pain meds. I dont know where else to look for help.

  • I take it you're not in the UK? I really feel for you, I've been there, I've had nearly 3 years of being passed from one unhelpful and unwilling doctor to the next, and have been prescribed so many drugs (it seems like sending you off with a prescription is the easiest way for some of them to get rid of you). Hopefully someone with similar pain will be along soon to offer more specific advice. I have finally found a doctor who cares and send to have identified my problem, but it was only through keeping notes of every symptom, every appointment, every possible cause that I'd researched and put together my own notes and contacted loads of consultants to see if they could recognize anything that they were familiar with. It really makes me angry to think of where I might still be had I not taken things in to my own hands. I write a blog painpositive.wordpress.com, if you want to get in touch with me for some moral support (there's no kind of financial gain for me via this link, I purely use it as an outlet for my frustrations and to communicate with others living with pain). Best of luck x

  • Hi Toni,

    I'm interested that you have managed to find a doctor who sympathises and is of help. I'm very glad for you! I've been suffering a chronic pain condition for 3+ years now and have tried pretty much every muscle relaxant, trigger point therapy etc etc with no improvement. Due to the deep trigger points causing the pain, my muscles have become very hard and when I move, they make a horrible crunching noise (like walking on icy snow) because they grind across my bones as they are so hard. The hardening of my muscles (predominantly my left upper back and left chest, leading up into my neck and head) is almost as bad as the pain because I am always so uncomfortable and makes me feel very rigid. I'm interested to know if anyone else with a chronic pain condition has muscle hardening similar to me? Take care :)

  • Hi leagle81. have you joined the fibro community on health unlocked? Its a really supportive group and you will find you are not alone and plenty of people there with answers. I have fibro along with other health issues and the pain is constant. Feel like I have flu most of the time and the brain fog and fatigue is frustrating and exhausting. I find I have had to learn how to slow down with everything and pace myself so I dont get too fatigued. I found mindfulness really helpful (its a kind of meditation). It doesnt take the pain away but helps me to cope better. I got the mindfulness course through my GP so might be worth having a word with yours. Gentle hugs Joolz.x

  • tpauk.com

    thyroiduk.org.uk

    b12awareness.org

    Hi, sorry to hear you are having so much pain with little help from the Drs! You need to take things into your own hands. Read and research as much as you can, have a look on the web sites above for a start, see if anything relates to your symptoms. Use the forums for information and support.

    Good luck!

  • I was told by a pain management doctor that I too had fibro... I don't accept it. It seems to be the cover all for everyone who goes to a doctor with generalised pain, lethargy and fuzzy brain!

    In 1995 I was diagnosed with slipped discs. I went numb all below my waist and had to have emergency surgery to save me from being in a wheelchair permanently. Since then I have had several more discs out, the worst being in my neck. I went to the pain management specialist at the behest of my GP when I presented with all of the above symptoms and was on Oxycodone/Co-Codamol for pain. He took one look at me and asked "Why do you think you have slipped discs?" I told him MRI scans and a neurologist. To which he told me "Have you heard of fibromyalgia?" That was it! I was another statistic.

    I look at it this way, the pain from my back causes other parts to hurt EG Muscles because of the way I move. That in turn causes me to sleep badly, which in turn makes my thinking process slow. If I were you I would ask to see someone else and get to the bottom of your pain.

  • fibro is a name for a set of symptoms, it is not a cause for the symptoms. The symptoms you describe can be caused by poor body posture and poor muscular control.

    If the symptoms you have are caused by poor posture and poor muscular control no amount of so-called pain killers is going to help. You will need to see the specialists who work with muscular problems hands on.

    These specialists are massagers, yoga teachers, Alexander teachers, chiropractors to name just a few.

    Hope this gives you something to think about. If you have any questions I will be happy to try and answer them.

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