Hello....just diagnosed with Fibromyalgia. What can I expect?

Posted , 6 users are following.

As the title says after over 9 years of pain which I just put down to me being silly, overweight, unfit, having a bad back, getting old blah blah and having quite extensive investigations by my GP which has excluded other causes of my pain, my GP has this morning diagnosed me as having Fibromyalgia.

I truly don't know anything about it.  He told me about nerve transmitters or something but it totally bamboozled me.  I have only gone back to him because things had changed and by the time I go to bed I have become a 5ft 2in block of unbearable pain which totally began to freak me out.

Can anybody please give me insight into what it is?  And how I can best manage it?  He has given me Duloxetine to take.  

Anything really - I feel totally in the dark.  But am now going to make a brew and try to read through several of the posts on here in the hope it will give me a better understanding.  

Many thanks and best wishes to you all x

 

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10 Replies

  • Posted

    Sorry to hear about your fibro. I have had it since 2001. Just keep researching it. It is no fun but not a death sentence. Pain. Fatigue. Flu like symptoms.  So many things. I watch my flour and sugar intake. Go for walks. I do not take any meds. Just ibuprofen. Need stronger but I am scared to. Read Anthony Michaels The Medical Medium. Get it on Amazon. He has a cookbook and one about thyroid. In short, Fibro comes from the Epstein Barr Virus. He explains it all in his book. Stay strong. Take care

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    • Posted

      Hi Geena,

      That book you mention on Amazon, is it dedicated to Fibromyalgia only, or just a mention? I will go look it up but wondering if you found some excellent information in it or it just covered a variety of things.

      Have a great pain free day!

      Thanks!

      (BTW - if the 314 after your name is your bday, that's mine also) 

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    • Posted

      Hi Glenn...this is a fascinating book. You will read at the beginning about him and why he wrote it. He writes about many diseases and illnesses that we have and why we have it and what we can do to heal from them. Like I said, the fibro comes from the Epstein Barr Virus. Start with Medical Medium Secrets behind chronic and mystery illnesses and how to heal. Then he has Life Changing Foods, Liver Rescue and Thyroid Healing. They are beautiful books. The 314 is my wedding Anniversary so Happy Birthday on my Anniversary! Take care

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  • Posted

    Hello Tealover,

    I'm taking Dulocetine 60mg along with some other medications. Fibromyalgia is very (can think of the right word) but it's all over the place. I have a very comfortable bed I which I am comfortable with but someday I can lay down on I and it feels like I'm lying on bricks. There is restless leg, sensitivitys like burning skin, noise, light, humidity, etc. You have to Pace yourself because if you don't you are done. I'm usually down 2 days afterwards when you do too much.

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  • Posted

    Hi I have fibromyalgia for about 2 years also spondylitis arthritis I live in pain every day but have managed it with pain medication or honestly I think I would be bed ridden I am 48 with a beautiful family that supports me and I take my mum and my husband to all my appointments so they get a better understanding of it and what I’m going through 

    I take Lovan it’s a antidepressant 40mg once at day at night time I have tried all the pain killers and the only one that has helped me have a semi normal life my husband and grown kids noticed the difference in the first week I don’t like to write it on any where as it has a stigma to it and yes I have never taken any pain medication before fibromyalgia 

    So I take 10mg x a day methadone it is awesome for pain and has basically changed my life and in lots of FB fibromyalgia pages some ladies are taking it and it has helped them so I asked my GP could I try them he said yes and I also go a yes from Rheumatologist who diagnosed me with fibromyalgia my GP was certain that’s what I had wanted to get a Rheumatologist just to confirm I know some people say no you shouldn’t be having it but it’s working for me every one is different we are all in the same boat but people take other avenues and that’s mine 

    My pain started in my back I woke up bent over every morning in pain then the pain would spread to other areas of my body if I do to much because I’m having a good day I do suffer the next day you have to get to know your own body it will tell you when you have over done it now my left ankle is killing me burning sensation so getting a ultrasound on that and a X-ray fibromyalgia is different for people some get it worse than other some choose to change their diet I’ve tried the hemp oil did s**t all for me but may work for you I’m happy to answer and questions you may have 

    Sending you lots of love and light ❤️❤️❤️

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  • Posted

    Hi Tealover - that's a good question and there's not one answer fits all. We all suffer differently and we all cope differently. Some people go on with their lives and fibro is a side-show for them, while others declare themselves permanently disables. As someone that has suffered with fibro since 1987, I can tell you that the more you stay active, eat properly and keep your weight in check, the better you'll feel. I made up my mind I wasn't giving in to this annoying FMS and 30 years later, I still won't. 

    Join support groups and share your story with others. Read good info from reliable sources. Most of all, trust your doctor and rheumatologist. Remember, fibromyalgia can't kill you. It can just make you adjust your lifestyle a bit. 

    I would be irresponsible to tell you what to expect because again, we all are different. You'll hear a thousand different stories. You have to find your own niche, trust your instincts, stay strong and don't give in to it. The fact is, you'll have good days and bad days. You'll find what aggravates it and what helps it. 

    I wish you the best and hope you find more relief than pain. Stay strong and stay active. 

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  • Posted

    Hiya tealover I love tea too..., welcome to us..try googling it..there are so many different symptoms too many to mention, but once you get one you’ve never had before please don’t stress out and think it’s something, else .either look on here or google a reputable site, you will find invaluable help on here as we all go through it and are very empathetic..have a lovely day and be blessed🙏🙏🙏🙏😍😍😍😍

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  • Posted

    Thank you all for your replies, so helpful for me.  I am a born worrier - somebody asked me why once - how the hell do I know lol!  But I wouldn't describe myself as a pessimist but just a worrier.  I have worried myself to death for the past 10yrs probably more with all of these pains, sat with the GP in tears, not able to put my discomfort, "symptoms" down to anything but something dreadfully terminal.

    But now as I type I have a new pain just come in my left shoulder, rather than worry about it I can at least now try to accept it.  Last night my big toe.  I have done alot of reading over the weekend.  I still don't understand what he was saying to me about nerve endings and pain transmitters or something like that.  And I wish I could.  I see him again in a month - I suppose to see how I have adapted to the medication. 

    I have terrible pain in my upper back, generally the right side which builds up the more I do so by evening I can be screaming with it.  Sleeping gives me a similar pain or "stiffness" in all of my ribcage as does standing in the same spot for a couple of minutes - such as chopping veg for tea.  I work a couple of evenings - keep moving but by the time I get home I feel like I am a plank of wood I am so stiff, and then in bed my legs begin to burn and ache.

    I have read so many accounts however that state that people's pain begins in their legs or below waist level whereas mine is predominantly above waist level, until I get to the end of the day.

    I have taken my first Duloxetine last night - but have been awake since around 3am and this morning feel dreadfully sick.  I was already nauseous but this is a case of not being further than a couple of feet away from the nearest bathroom.  Is this likely to be the medication and will it improve?

    Sorry I have so many questions - and thank you again for your responses.  

    My very best wishes to you all x

     

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    • Posted

      Hi Again, Tealover - I found that there were many, many meds I could not tolerate. I ended up with the one and only I take at bedtime, Xanax. I take only a small dose because of the addiciton baggage of benzos but without it, I would never sleep. Some people have success with Gabapentin and other have success with the anti depressants. I cannot tolerate either. Gababpentin or Neurontin worked well for about a week and that it made me so moody, I couldn't stand myself. Duloxetine may not be your home run drug. I'm not sure I should say give it a chance even though it's making you sick, or realize you're having a reaction to it and not even bother. Either way, call your doctor and inform him/her of the reaction.

      I wish you a pain free day!

      Glenn

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