newly diagnosed :-(

Hi all,

9 months ago I was diagnosed with pernicious anaemia, today I was also diagnosed with Fibro and Chronic pain.... feeling really low and not really got a clue where I am going or what I am doing, so I have joined a couple groups here to try and get some info on all 3 and change my life.

Have been arguing with Dr's for 5 years to get to this diagnosis, and although I am really happy to finally have some answers, I am also pretty upset I got into such a debilitated state before getting help.

Sorry for the negative post, bit all over the show! - Looking forward to getting to know you all and getting some fab words of wisdom.


8 Replies

  • Hi Gem, warm welcome to you. This is a wonderful site with many wise souls and we all support and care for each other, so hopefully you will find some new friends here. I'm so sorry to hear about diagnosis, yes it some ways it's a relief to finally have an acknowledgement of your condition but yes it sucks big time! There is much info here and also on Fibroaction website.what plan if any has your GP suggested? Are you on any meds to help, been referred to pain clinic? Perhaps when you post if you can think of your most pressing issues, like sleep, pain, fatigue and relate your enquiries to these specifically you will bring all the fibro/pain gurus to your aid.

    Again welcome my lovely and hang in there.


    Jo x

  • Welcome to the best site I have found for fibromyalgia! We all understand the ups and downs of Fibro and will try to support all of those dealing with Fibro and other things. We have many who have multiple health problems. Try to stay positive as much as you can is the best advice I can give you. Fibromyalgia is no joke it hurts. A lot of us laugh as much as possible because crying seems to make it worse. Although I and many others have cried simply because sometimes we don't have a choice. I for one have had fibromyalgia for more than 40 years. Way back before they had a name for it. Feel free to ask questions and contribute when you can. I hope you find the answers you seek as well as meds that work for you.

  • Hi Gem, welcome to the site, hopefully we can soothe some of your fears and worry.

    Regarding you pernicious anaemia, quite a few Fibromites have this and it can be caused by low Vitamin B12 levels. Ask your GP for blood a test for B12. If your levels are low your GP can prescribe 3-monthly B12 injections.

    Your Rheumatologist or GP can also refer you to the pain clinic - apologies to all as this is the third time I've posted this today, please see below:

    Take control of your own destiny and ask your GP for a referral to the pain clinic.

    Unless your GP has had lots of experience of treating Fibromyalgia, the pain clinic is the best place to go to get advice on medication.

    Take notes while you have your consultation cos you'll never remember it all!

    See if the pain clinic can offer you a pain management course - my hospital calls it an 'Energy for Life' course, other hospitals may have different names for it but they will all offered a similar curriculum.

    My course is one morning a week for 6 weeks and I'm on week 5.

    They cover:

    -the acute pain/chronic pain cycle

    -how to pace yourself

    -graded activity

    -medication options

    -relaxation methods

    -setback/relapse prevention

    -acceptance and self-management etc.

    Once you start to feel 'less hopeless' about this illness, you will feel more in control.

    You will also meet other people who are in the same boat as you, to a lesser or greater extent and it really does help to know that you are not alone.

    Off course, it should go without saying that you have made a brilliant step forward by coming onto this website - you'll start to feel that the other fibromites are real fibro-mates as well, as they are so supportive and loving!

    Hugs and best wishes, Maggie xx

  • Hello Gem

    I just wanted to wish you a very warm welcome to our kind, compassionate, informative forum 😊

    I fully understand your frustration at the amount of time it took for you to get your diagnosis, but you will find that many of us here have fought for decades to get answers.

    It took me 34 years to finally get mine!

    Please may I offer you one piece of advice? I understand you need answers and want to sort things out, but my advice would be just to take a couple of weeks for your diagnosis to sink in before you start trying to sort everything out at once.

    If you try to sort too much out in one go, you won't know what has worked and what hasn't.

    Fibromyalgia affects each and every one of us in very different ways and what works for me may very well not work for you.

    I look forward to seeing you around and getting to know you better. If you need any help navigating the site, give me a shout and I will do my best to help you.

    Gentle hugs

    Lu xx

  • Hi gem

    The people on this site are great as you can see from the comments. I do hope your ok, when I joined I was just so glad that people described how my life is and they understood me :-) just having that has helped me.

    it is life style changing and they things you used to be able to do will bring sadness at times but you are still the same person ! Even tho sometimes you might not feel like you are. I do try to still joke and laugh and be silly.

    All the best Keeley x

  • I am.overwhelmed at such lovely replies I don't know where to start replying except to say a huge thank you!!!! .... My rheumatology consultant has referred me to physio and pain management clinic so hopefully I will be making some positive moves soon..... I have hundreds of questions, so many I can't actually think of any.... But as one of you suggested I think I need some time for it to sink in..... I got to the point where I thought I was imagining it.... And after so many people saying " but you look fine" it's a huge relief to know im not crazy!! ..... I feel a bit of a fraud, as today is a good day, and im so used to just coping I guess I kind of didn't believe it...... Does that make sense??.... Im on my phone at the min, but i will reply to each of you tomorrow.... But again, sincere thanks and appreciation for you warm and kind messages xx

  • Welcome to the forum, and it is wonderful to make your acquaintance. I genuinely hope that you are feeling as well as you possibly can be today? I sincerely hope that you find the forum useful, informative and loads of fun!

    I am so genuinely sorry to read that you have been suffering and struggling so much and I sincerely want to wish you all the best of luck.

    All my hopes and dreams for you


  • Thank you ken.... Today is going to b a tired day :-( my back is super sore today n sleep is not good, but hey ho lol thank God for coffee n Dr's for painkillers!!

    Thank you for your kind message



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