Hi All

I want to thank you all for your advice from my previous post, and let you know where I am at now.

I took your advice and went to speak to a different GP at my surgery and although he couldn't explain why the information was not on my notes. We had a long conversation and he has "officially" diagnosed Fibromyalgia. This was then confirmed by a consultant at the pain clinic. My GP said if there are any tests or treatments I would like to have I can go to him and he will do his best to get them for me, which sounds good in theory, but I am not sure what would benefit me ! So can I ask if anyone has any ideas please ?

Thank you xxx

14 Replies

  • I'm pleased you are being taken care of now. As for tests I would recommend testing for low Vitamin D, B12 and thyroid function, this is from my experience I'm not a medic. Lou xx

  • Hi Lou

    Thank you. It's a relief that I can now move forward ! That is a great recommendation thanks. I realise you are not a medic, but I am sure having the condition makes you more of an expert :-)

    K xxx

  • Hi

    That's fantastic to hear :)

    There are various things you could ask your GP to refer you to.

    Here are just some of them:

    CBT (Cognitive Behavioural Therapy), Physio, Hydrotherapy.

    My mind has now gone completely blank! I am sure others will fill in what I have missed.

    I found out recently, after some bloods, that my foliate levels were too low. I am now on a supplement and my palpitations are not nearly so bad now.

    I have read that others have low foliate levels too.

    It's wonderful to hear that you have found such a supportive GP.


    Lu xx

  • Hi Lu

    Thank you. I really landed on my feet with this GP ! They are great recommendations thank you. I don't know what foliate levels are, so I will investigate. This is the kind of thing I was hoping all of you experts would be able to help me with :-)

    K xxx

  • Hi K

    I'm sure that in the middle of the night, when I am wide awake(!) I will think of the other things you can be referred for :)

    Do you mind me asking what the Pain Clinic did for you and then I can rule those out.

    Have you got pain relief sorted out?

    Having an understanding GP is a real blessing.

    I am certainly not a medical expert :) I just know what works for me.

    I've had this dratted (is that even a word?) illness for over 30 years and feel like I have tried everything going, but I am still learning even after all this time.

    Lu xx

  • Hi Lu

    Sorry I haven't replied earlier. I've been having a rough few days.

    The pain clinic has been treating me for the chronic pain in my neck, back,shoulders and arms which is in my left side. I have had the various injections, with minimal success. I tried Physio, but even the gentlest of touch was too painful.

    The pain clinic have just referred me to a living with FM course.

    Pain clinic have told me I am now max'd out on pain relief regardless of the fact that my pain is not manageable. Will need to have a chat with GP what to do about that !

    I do like the work dratted ! Haven't heard that in a while ! :-)

    Wow that is a long time to be battling ! Have you found it has got progressively worse over the years or does it go in phases ?

    I do appreciate you sharing your knowledge. It really helps me :-)

    K xxx

  • Hi K

    I can only speak for myself regariding my long experience with Fibro and my 27 other conditions.

    I have found that each time I have suffered a trauma in my life (and sadly there have been quite a few) my pain has got much worse and it has stayed that way.

    Without a shadow of a doubt, for me, stress makes my Fibro flip through the roof.

    Perhaps you could have a chat with your GP about changing your meds around and trying a different concoction?

    Like you, I'm maxed out on pain meds, but am still in dreadful pain.

    I guess I was showing my age with the "dratted" 😊

    L xx

  • Hi Lu

    Thank you for sharing that. I am sorry that you are suffering so badly with pain as well. I am the same as you with stress, it sends my pain through the roof. I am no longer working so I can pace myself, but at the moment nothing is giving me relief. I am going to have to speak to my GP, but the thought of actually getting myself up and dressed to see him is quite daunting right now !

    I find heat is my only friend when things get this bad. Even though it's summer I still have an electric blanket on my bed ! People think I am nuts ! Do you have other things you use ?

    Ha ha you must be 21 as that's how old I am in my head 😀

    K xxx

  • That's great news Misty, glad you are finally getting the help you deserve. Good luck x

  • Thank you. It's a great start xxx

  • So glad you have at last got a sympathetic GP they are worth their weight in Gold!

    As others have said the classics tests are for low Vitamins and Minerals and to make sure that your Thyroid is operating at its optimum level.

    If your GP is unsure of what pain meds would be best you could ask for a referral to a Pain Clinic. These vary throughout the country as to what they do but they are the experts in pain meds and might be able to give you access to various treatments. There are also Expert Patient Programmes which are courses where you will meet with other people suffering from various illnesses and you can learn different methods of coping with things.

    You could ask for a referral to a physio for help with exercises which can help with keeping your body as active as it can be. Occupational Therapists can often help with aids and occasionally things like pain injections. I was also referred by the physio for a 6 week course of Hydrothereapy which I loved and also had 8 weeks of needle acupuncture. I already get the Electronic version on my spine only from the Pain Clinic.

    I think these are enough to start with. Good luck and let us know how you get on.xxx

  • Hi Rosewine

    Thank you for your reply. I have to apologise for not getting back to you sooner, but I have been having a rough couple of days.

    I am definitely going to get the vitamin, mineral and thyroid test done. Did you have it done ? If you did and it showed a deficiency did you take supplements ? And if so did you notice a difference after ?

    I have had a chronic pain condition for the last 3 years after a car accident so I have had injections for that and I do have a lot of pain relief although my pain isn't being managed at the moment, but that's another story !

    You have given me so many great ideas, really appreciate it. Do you know how you get to see an occupational therapist ?

    I will keep you updated :-)

    K xxx

  • That is wonderful to read that you have found a sympathetic and listening GP. I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • Thank you Ken xxx

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