How am I supposed to be feeling ????

I have recently been diagnosed with Fibromyalgia, and I have lots of symptoms and pain in my hips. I am very confused about how I am supposed to feel about it all. Myself I feel tired /exhausted, in pain and downright miserable. I just want to be on my own with no noise, which can be difficult and I have five grandchildren, who I normally would love to have around.

When I go to the consultant he is not very supportive and doesn't acknowledge or empathsize with me and makes me wonder if I am imagining it all ?? I have gone back to work today after 6 weeks, and my Manager doesn't seem to get it either. I am taking Steriods, Amytriptyline , and strong pain killers (codeine) Saying I feel like a zombie is an understatement !!! Can someone tell me if all this is normal ???

Gillian45

7 Replies

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  • Hi and welcome to your new fibromites family!

    Yes this is normal I'm afraid. Fibro is a devious illness to have and my heart goes out to you. My advice would be to try a different gp in your practice or even a different practice. Having an understanding and sympathetic dr is vital when you suffer with fibro as it can take alot of time to get your medication just right and is a case of trial and error. There may be other medication you can try in order to manage your pain and fatigue so please persevere.

    Can I ask if you have been referred to the rheumatologist? If not, ask your gp to refer you as they can often be more knowledgeable about fibro.

    It takes time to get used to the idea that you have fibro and that your life will probably change dramatically in the way you manage things but it doesn't have to be a negative thing, in fact, it can be the total opposite in many ways as it forces you to take stock of your life and to " slow down and smell the roses" so to speak.

    I hope you feel better soon. Please ask if there's anything you want to know as even the strangest symptoms have been experienced on here! We all rant and moan, tell stories and generally help each other out on here. Everyone on here are so friendly and welcoming, feel free to join in or just read the posts. I tend to read posts every day and don't blog or answer questions very often but I know I can if and when I want to.

    Love and gentle huggles

    Chilli xxx

  • Hi i do find when you first start on Amatriptyline you get what i describe as a kind of hangover but taken regularly my body became used to it and i learnt to iether sleep through it (when poss ) or work through it. Even now after many years i still struggle but you will find it harder as you are newly diagnosed so your just learning to deal with it as far as your consultant, be honest with him/her at how you they make you feel and if they don't change their attitude then ask about a transferre to another doc. I have adopted a don't bullshit me attitude but with in the realms of politness , it helped me to read up on diff meds and fibro so that i have control. As for your boss give them some literature on it and maybe a chat to a special advisor at the job center will be able to help.

    I don't work anymore and i'm only 33 and i get no benifits as not deemed bad enough which i'm fine with because when i have a good day i can do what i want with out looking over my shoulder, but i did greive for the loss of life i wanted and the things i could no longer do and maybe you may be going through a similar situation.

    You need to do what's best for you, getting your own head round it is hard enough with out worrying about others. You will learn how to cope with it, but the beginning is always hard. I'm sure you are a strong woman who will surprise yourself just give yourself time honey.

    XXRachiexx

  • Hi, my heart goes out to you - as I know so many will on this site. I am recently diagnosed (March) and whilst my symptoms have settled a bit, they still peak and trough. Dealing with the emotional side of things isn't separate to the physical side because one feeds the other. I have found CBT helpful and had some general counselling at my GP's too. However, the counsellor that is helping with the CBT for pacing understands fibro and is really empathetic. As Rachie said - you have to learn as much as you can and take control of 'it' and the people who are supposed to help you. It seems you have to be in charge, say what you want to happen and insist on it - which can be a bit stressful in itself, but one thing for sure is that the NHS doesn't provide very well for fibro because it is a long term condition without cure. I started to see a wellness specialist and improved 100% - I still go, and know that it helps me a lot to keep going. They also really understand fibro and don't judge me - when I say I am in pain, I never feel doubted, and they help me. I am always on the look out for alternative therapies and opportunities to help myself as I have accepted the NHS limitations. I asked my GP for the counselling and there should also be CBT for pain management (but not in my county at the moment) I joined an expert patient programme recently - and I have had physio and this led to hydrotherapy. There are lots of things that can help, but you need to ask and persist and not give up when one doesn't work for you another type of treatment may. Keep blogging and asking here - everyone is brilliant :-)

    Best wishes to you and soft hugs ((( xx)))

  • Chilli, Rachie, Suzysparkle, What lovely people you all are, you brought a tear of relief to my eyes x The Rheumatology consultant that I have been seeing makes me feel like he doesn't believe me, but I did have a bit of a strop last week and told him whats the point of all this pain relief and I still have pain ?? So I now have painkiller patches for my hips which I am giving a try, but he made me feel guilty by telling me how expensive these are.

    I am also starting counselling next week, which I think will help. I will be logging on here regularly now as you have made me feel that I am not alone with this.

    Thank you

    G x

  • Hello and welcome to our lovely forum Gillian, it's a pleasure to have you here with us! :)

    How you are feeling is completely normal, it's how I felt just after my diagnosis, I didn't know which way to turn to be honest with you. It was such a shock! I went from being a cyclonic sort of person, working over 12hr shifts at work, physical hard work, still being able to do a big food shop, stop off at Mums to check she was ok whilst having a cuppa and then have bags of energy left when I got home after a 25 mile drive! I used to need 4-5 hours sleep and then I was ready to go again! With Fibro I became a bed person to start with, I couldn't get out of bed, the pain was hard to take too.

    Eventually after changing Rheumatologists as the first one I was referred to by my GP didn't have a clue and refused to acknowledge Fibromyalgia at all, I got my diagnosis and the correct meds for me, things started improving at this point. I was referred to a CFS (Chronic Fatigue Syndrome) Clinic and was taught Pacing Therapy, it changed my life! I can now do far more than I could four years ago when I was diagnosed, I enjoy life more too and although things have changed, I have adapted and I am happy. That's the truth, My meds suit me well, my pain is managed and I pace myself every day, my well being is better too. It is possible to still live a good life, a full life! :)

    The first question I asked immediately after diagnosis was "is it going to kill me", it sounds ridiculous now knowing what I know, but at the time that was my only concern for my hubby and family. Once I knew it wasn't going to kill me, I accepted it and decided to fight it for all I was worth, Fibro wasn't going to get the better of me, I was going to enjoy my life! :)

    I stopped working over three years ago now and have found new interests, some more sedate than others but I enjoy them all the same! I am still learning about what I can do, an achievement is a victory especially when it's something new! I love that feeling and hubby tells me he's proud of me, so many things are achievable! :)

    I guess what I'm trying to say is don't be too hard on yourself at this stage, there is a lot to come to terms with after being diagnosed. Give yourself time. Do a bit of research, take a look at our main site, click on the link below - there is so much information there -

    fibroaction.org/Pages/About...

    Also take a look through the Questions, Blogs and Tags here in our forum, there is a wealth of information there too, also advice, support, personal experiences, friendship too! We are all here for you, we are all in the same boat and we all understand.

    If there is anything you aren't sure about, please ask. We are always only too happy to help wherever we can. We care about you and all our members.

    Sorry for waffling on, I hope what I have said makes sense, please feel free to private message me at any time. :)

    I hope you enjoy your time with us here at FibroAction! :)

  • Welcome hun

    Like others say this is all normal. For me craving quiet is the worse thing of all. Even now hubby is bashing away at some monster on the Xbox and the noise is driving me insane. Plus I thought I was starting with a migraine but it is a damned cluster headache. I know that because it went away after about 15 minutes and is now building up again, so time for another breakxxxxxx

  • Thank you so much LibertyZ - inspiring x

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