Pernicious anaemia and fibromyalgia

[heather_turner]

It’s been a while since I’ve been on here, life has a funny habit of getting in the way!

What can I say, I went for my rheumatologist appointment. Apparently I’ve also got fibromyalgia - I’m not convinced. I think it’s generally an umbrella term for “you’re in pain and we don’t know why”. They sent me for 3 A4 sheets worth of blood tests, all fine, no arthritis, they seem to have ruled out a number of things, but I’m sure there’re so many things in the world with such similar symptoms that it scares me thinking it could just be something unknown. I’m still taking vitamin D supplements, using my B12 patches and going for injections, as well as being prescribed Amitriptyline to help with deep sleep and muscle repair. A lot of days I honestly feel worse than I ever have before, I using a walking stick far too often for an 18 year old, I’ve had to quit my job, my relationship is balancing on thin ice because of my mood, and as much as I try to stay positive I am really struggling in my head right now.

It really feels sometimes that the outside world doesn’t see how hard I’m trying every day to be a “functional” human being.

I know my next step needs to be seeing an OT, I’m lucky enough to have friends with experience in this kind of thing, but to me it feels almost like giving up the fight and just accepting that I’m going to have to live off ESA all my life, and I’m not going to be able to do a lot of the things I want to do - I think that’s what I’m struggling with the most, it’s such a daunting thought and it’s making it very hard to start the whole process and make that very simple call to my GP.

Anyone with any advice or opinions on how to deal with this long term, as it currently seems I’m going to have to, I would be so grateful to hear it

[Marymary7]

Have to be brief sorry. Some experts like Dr Lowe believe it's untreated Hypothyroidism, go to the sister site on here and you will find info. Good luck and keep reading.

[heather_turner in reply to Marymary7]

I’ve had my thyroid hormones tested a couple of time and all seems to be fine, thank you though

[Marymary7 in reply to heather_turner]

Fair enough but sometimes the doctors blasé 'you are fine' is far from the truth and worth getting your Thyroid bloods and posting results on thyroid site. It's not just Dr Lowe that has made the connection.

[Marz in reply to Marymary7]

Agree !

[Marz in reply to heather_turner]

Do you know which Thyroid tests were done ? Sadly the NHS is equally bad at diagnosing thyroid issues as they are B12/PA. I have been on the Thyroid UK Forum here on HU for seven years and if I had a pound for every time a member was told their results were fine I would indeed be a rich lady On delving deeper - we discover only the TSH was tested and occasionally the FT4. The correct testing also needs to be the FT3 and Thyroid anti-bodies TPO & Tg - in order to rule out Hashimotos - which like PA is auto-immune.

In 2000 I was diagnosed with Fibromyalgia by a Consultant Rheumatologist in the UK. In 2005 my GP here in Crete tested my thyroid and I was found to have Hashimotos. It has been a long journey but I am now much healthier as I hurtle towards 72 in a week or so ! You can click onto my username and read my Bio - only takes a couple of minutes !

Always ask for your results with ranges - you are legally entitled to them. It makes posting easier as you can give more information to help members respond helpfully and also enables you to monitor your OWN progress and see what has been missed.

Your TSH needs to be around 2 - the FT4 and FT3 in the upper part of the range. Sadly the NHS rarely test FT3 and it is the most important test as it is the ACTIVE hormone needed in every cell of your body. Also there are two anti-bodies - again the NHS test only 1 - and so people are mis-diagnosed ...

Private Testing kits can be sent to your home - replies by e-mail - Click onto About Testing - in the link below ...

thyroiduk.org

[heather_turner in reply to Marz]

All I was told was they tested for under active and over active, not a lot else was mentioned! The more I read into things like this, the more I realise you really have to know what you’re talking about before you even set foot in the doctor’s office :’) thank you so much for your help, I’ll definitely be making another appointment armed with lots of questions!

[Marz in reply to heather_turner]

If you click onto the link I posted for you above - you will immediately see an advert for 20% off Medichecks Testing during September. Testing Kits sent to your home. It is the only way to have the correct testing done - sadly. Fibro can be linked to LOW T3 - and that is rarely tested in the NHS so .... always important to exclude things.

[StaffsLass in reply to heather_turner]

I had a full thyroid check in Dec, including antibodies, my GP said everything was "within normal limits" which peed me off as I find that a cop out. Within who's normal limits?

I saw my rheumatologist 10 days ago and he says my thyroid is on the low side of borderline & is to be rechecked in 6 months.

It's frustrating as hell when 2 professionals have a differing view on the same topic 😬

[Callo56]

Hi Heather_turner. Sorry to hear you are struggling. I have diagnosed PA (& Vit D deficient,) and Fibromyalgia, which was diagnosed around 5 years after the PA. It has taken about 4 years of 'trial and error' for GP and I to get the balance of B12 injections every 8 weeks, Vit D and pain relief (high doses of Amitriptyline) right for me. I still have some pain here and there but I can live with that.

So don't think you'll never have any respite. Because you can't 'see' PA and Fibromyalgia people often don't understand the pain. I'd suggest you work with your GP, be honest about your symptoms and, although it might take a while I'm hopeful you'll get the right balance in your medication. There are lots of people on this forum who have a lot more knowledge about this and can provide lots of help via links to documents and websites.

Good luck

[heather_turner in reply to Callo56]

That’s really interesting, every time I’ve been to the doctors they’ve told me 3 months should be often enough, and left it at that. I’ve tried really hard to get more frequent injections but seem to be at a loss!

Thank you for your help and kind words

[Gb57 in reply to heather_turner]

I understand how you feel. You can buy your B12 on line from Germany. Not sure of address, I'm sure one of the lovely people on this site will point you in the right direction. I wish you well

[Blueoxo]

Hi Heather, what you have said resonated with me. I too have pernicious anemia, fibromyalgia and also underactive thyroid. The thyroid I have had for a very long time and never had a problem with. I believe it is the pernicious anemia and fibromyalgia that cause my problems. I use the B12 patches, vitamin D and have the injections. I also take amitriptyline. I had a really bad two years, halved my hours at work, social stuff became a real effort as always tired and then out of the blue, earlier this year for some reason I really perked up. I have no idea why but fingers crossed the last 6 months have been good. If I try and think what helped most in the past few years I think it is doing exercise. Probably the last thing any of us want to do but the benefits make up for it. I also have my B12 injection every 8 weeks now which has also seemed to help and a good night sleep (firm mattress helped) . I guess I just want to say you are very young, don’t write yourself off completely as you never know what the next day might bring x