Do symptoms get worse?

Diagnosed last week, struggling to come to terms with diagnosis. Possibly feeling a bit in denial at the moment, has anyone else experienced this? Just wondered if it gets better or worse? Had symptoms for about 2 years, it's definitely got worse over the past 6 months. Have looked at a lot of the fibro websites, but couldn't really make any sense of it. I still work full time at the moment. It is a struggle most days but couldn't imagine having to give up work and worry that it may be inevitable one day. Sorry for the long post but feeling a bit overwhelmed by it all.

13 Replies

  • HI Alexander,

    It took a while for me to come terms with diagnosis, on top of struggling with it. I reckon that's only natural.

    Don't bottle it if possible.


  • Alexander,

    Sorry to hear your so alarmed by your diagnosis.

    It is natural and human to feel shocked and even attempt to disavow a diagnosis, but you will find that with a bit of time and space you will relax into it. I think most of us seem to eventually regard the diagnosis with a certain relief in that at least your condition has been recognised.

    Stress and worry has the ability to effect your pain level very deeply, if I can give you one bit of advise,,, work on letting he stress go,,, work at not reacting to lives little triggers,, it doesn't matter what it is,, the wife,, the kids, the dog,, driving,, the boss. Just recognise when your reacting to stuff, you will become much quicker and better at it with time and practice. Consciously calm yourself,, eventually you will without much thought start reacting to your stressors in a very calm manner.

    System stress,,, from things like not drinking enough fluids or drinking to much alcohol,, not getting regular rest can all have the same negative impact on my pain levels as mental stress so look at this at the same time.

    I don't think any two of us have exactly the same experiance of FM but there are many common symptoms. No one can say that it will get worse or that you will always have it,, you have it at the moment, that is all that can be said with any degree of certainty.

    Best wishes, Ray

  • Welcome to the site Alexander. I think it is a shock to the system when we are first diagnosed with any illness and you have to get your mind around all that this means to you. I think we go through the process of denial, anger, grief etc but most of us eventually come to a stage where we are much more accepting of our illness. it does not mean that we don't rail against some of the uncertaintities of it but we learn to cope more easily with its ups and downs. It is hard to get your head around all the symptoms as they are so diverse and fluctuating and no ones experience is the same. It must be very difficult for you working full time so be gentle with yourself and get as much rest as you can.x

  • Hello Alexander, sorry to hear that you have the Fibro and yes things can get better. I now lead a nearly normal life, able to go out and meet friends whereas 20 years ago I could not get out of bed on my own.

  • Hi Alexander, my Fibro was bad then got a lot better. Unfortunately I have now had to give up work as it has returned with a vengeance. As everyone says each person is different with the range of pain & the ways that they manage their fibro.

    All I can say is find a local group for support & keep talking to us on here. Print off some literature for your family/friends/boss etc & let them know that it's ok to ask questions.

    Above all take rest when you need it & be kind to yourself.

    You will find that you do get some negative feedback from people that don't understand but on the whole you will find a lot of support.


  • Hi Alexander,

    I think although it is good to get a diagnosis, even a bit of relief that at last someone medical can know how you feel. I agree with what the others say, try to limit your exposure to stress as fybromyalgia really seems to react badly to it, and I find my fibro is worse if I don't sleep well, and if I have 'over done it' the day before..........just when you think you have sneaked in a normal day it bites back! It took me a while to get to grips with my limitations and was definitely in denial!! Even now years later, there are days, especially in a flare, that I allow myself to think of days gone by when doing things was so much easier. I struggle very much with hips, feet, and shoulders etc, and unfortunately I have definitely got worse and I personally(I am no medic tho) think fibro gets worse. But I have very much embraced my limitations and normally find a way round something, I'm quite stubborn with it, but in a funny sort of a way, my stubbornness has I am sure kept me going in the hard times. You have found a great fibro community here, they are very supportive. So ask away, someone is sure to have had it or knows about it. Take care x

  • I've found the overdoing it and being exposed to my traumatic memories in therapy (which is helping my brain but not my body) is causing a flare. Insomnia flare along with pain, i have to remember it's ok to sleep lots when i need it because my EMDR therapy is to help me process my trauma in my sleep.

  • Hi Alexander,

    Welcome :-) and I think you have now found the site where you will be able to get proper information and a huge amount of help and support from very good and kind members.

    Could I suggest that you visit our mother site where you will find a lot of information, and hopefully some more definitive answers to your questions.

    I really think the level of support from members here is second to none, and hope that you will find the same :-)

    Foggy x

  • Hi alexander120

    I am so sorry to read that you are struggling with your diagnosis and your Fibro. I always think the key is to get the combination of medication that suits you best (keep going to discuss theses things with your GP) and then pace yourself in everything that you do. This way your symptoms and any flare ups should be at a minimum.

    I want to wish you all the best of luck.

    All my hopes and dreams for you

    Ken x

  • My thoughts were "ive known for years about having ME/CFS at last someone believes me", even better i was told about local fibro groups (the only diagnosis of mine which has included referral directly to a local support group). However 5 years later a 2nd chronic pain diagnosis EDS/HMS arrived which has been harder to manage than my fibro. Only tramadol works :-(

    Depending on the person i think it's possible to work and manage fibro but as ive never been well enough to work i couldn't say. However i know someone whose has a power nap in her car at lunchtime and is allowed longer for her lunch.

    Have you tried asking your local jobcentre about 'Access to Work' or other schemes to help newly diagnosed folk like yourself (with anything that could affect work) to stay in work?

    i find ginger drink or tea helps with the nausea and some pain. Magnesium and B50s have helped with depression, anxiety and pain issues. Vitamin C and tonic water have helped with the constipation and foggy head. Avoiding food addictions to milk and gluten also helped.

  • Hi trekster22 I also have ME (have had it for 1 year. I have found that thankfully my symptoms seem to have slowed down. First of all I was suffering from constant palpitations and shaking and was in a lot of pain. Some days I could hardly lift my arms up to get dressed or brush my hair.

  • Hi Alexander

    Just a thought.

    Why don't you ask to be referred to a Pain Management course. It's doesn't manage pain away but I found it very helpful in helping me organise my thoughts as to how to adjust my life.

    The course I attended covered aspects of managing my job in a different way.

    Good luck. On your journey.


  • Hi Alexander and welcome to the forum. I can't really add much more to what you have been told but wanted to say Hi :)

    For me diagnoses was a big thing but a relief to know there was a name for how I felt. I have found a lot of information through the people on this site and a lot of support too, I hope you can to :)

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