Newly diagnosed.: Hello everybody. I... - Fibromyalgia Acti...

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Newly diagnosed.

HL1988 profile image
13 Replies

Hello everybody.

I have recently been diagnosed with fibromyalgia by a pain specialist consultant after 16 months on pain, fatigue and lots of other symptoms. I am a nurse but haven't been able to work for a year and the specialist has told me that it will be unlikely that I'll be able to work like I used to before getting poorly and that my whole lifestyle will be different. I am really struggling to get my head round me and accept that my body hates me so much an always will. Has anybody else felt like this or am I just being pathetic and overreacting. I am just feeling so overwhelmed and frustrated.

My consultant is referring me for a pain management programme but have been told that the programme is 9-4, Monday to Thursday, 3 weeks in a row. I have absolutely no idea how I am physically going to be able to cope with this. Has anybody had similar experiences? How have you coped?

Thank you in advance.

Holly x

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HL1988 profile image
HL1988
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13 Replies
SnazzyD profile image
SnazzyD

Hello, I too was a nurse and manager of a cancer help centre before having the rug pulled from under my feet for the third time. I had to give up work 5 years ago but not because of Fibro but an autoimmune condition (GCA). Fibro came along in the late 90’s and then cancer in the early 00’s but I carried on with a job and two small children. It took the last final blow for me to realise that I had to stop seeing my body as a lazy mule that had to pick itself up and keep going. I could easily get a medal for my will power and resolve, but zero points for actually looking after my body and soul. I have lost count of the number of times I read people either regarding illness being got at by some external force that one has to beat or the body letting them down that therefore needs beating too. You are using quite unkind ways of describing yourself and what you should do. I expect your body has been screaming at you to change something for a long time. Time to sit down with it, give it a hug and ask what it needs, truthfully. For me it meant sitting down a truthfully finding out all the things I’d been suppressing all my life and put away the superwoman cape. Yes, life has changed and it takes a while to accept it, but that change can also open one’s eyes to better things eventually. Be kind to yourself.

HL1988 profile image
HL1988 in reply to SnazzyD

Thank you for your reply. I really appreciate it.What did you do when you had to when you stopped nursing. I am struggling to see how I cam be "me" without ever being a nurse again. I think nurse are good at ignoring what we need because it's our job to care for others.

I am so scared of how things will turn out, everything is just so uncertain.

Thank you again.

Holly x

SnazzyD profile image
SnazzyD in reply to HL1988

My registration has lapsed so that’s it unless I do some sort of back to practice training. I guess for the first 2 years of an autoimmune condition GCA, I half thought I might be able to go back. Then I had quite bad adrenal function that knocked out the best part of a year. I then got Covid and 7 months of long Covid. I’m sure it has affected my memory on top of the whack I got from GCA. Fibro that had been managed (ignored?) for years up to then became more obvious as acute illness passed. Yes, I have grieved (still grieving?) but, and it’s a big but, it forces you to take off the old identity that is false really and get to know yourself properly and find self worth differently. It can be painful because one can’t clutter up one’s life to avoid the hard yards that need travelling on the road to self healing. We all get old and most have to stop doing what they love and sometimes hide behind, it is inevitable. Some of us, have that foisted upon us early. It’s kind of a gift that you didn’t want but needed.

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

Unfortunately, your specialist is correct in that fibromyalgia can be life changing and that it may not be possible for you to continue as you were before.

Pain management programmes can be really beneficial on helping you to learn about chronic /persistent pain, how to manage it and more importantly how to live with it

Although I have to agree that 4 days a week for 3 weeks, sounds pretty heavy going. When I did mine, it was a few hours once a week for 12 weeks. You wonder if they actually consider what it is like to be in chronic pain when they organise things like this

HL1988 profile image
HL1988 in reply to Hazel_Angelstar

Thank you for replying and sending me information on where I can learn more about fibromyalgia, it is all very new to me that my understanding is minimal but I am to scared to find out more and what it will mean for me.I am really scared about the pain management incase I fail and then never be able to cope with life with fibromyalgia. I am hoping they will give me support and understand how I feel and what to do if I struggle to cope

Thank you again.

Holly x

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply to HL1988

It can be a scary time when first diagnosed, and you will be going through a variety of thoughts and emotions around what is happening and what the future holds

Pain Management programmes vary due to where you live - so cannot say what it will involve exactly but most are based around education on what is chronic pain, learning to live with pain, pacing, activity and other pain management techniques you can use.

Gigiruth profile image
Gigiruth

Hi HL1988Sorry to hear things are so painfull right now

When all of this kicks off it can be so overwhelming. If you are a fighter you can end up fighting yourself. We can get angry with our bodies for letting us down and sabotage our own best life. You and your body need each other more than ever now.

Change the things you can change and waste as little energy on those you can't.

It can be shocking to be told you have anything for life but with self compassion and care you can find balance.

There is lots of useful info about self care if you wearch this website

Take care of you.

Gigi

HL1988 profile image
HL1988 in reply to Gigiruth

Thank you for your reply I am my own worst enemy and I feel something must to be to blame for me having fibromyalgia and I see it as my body is letting me down by doing this to me.

I also find it hard as doctors have been so dismissive that I then feel I am being pathetic and should just get on with things.

It is just very difficult time and I am scared it will be for a while.

Holly x

crochetjoy profile image
crochetjoy

Hi Holly, welcome to this forumJust wanted to say hi cos I was a nurse all my life too - I retired 18 months ago

When I look back I only now realise that I have put myself through too much by being determined to keep going and keep strong somehow - I now feel like I've always had fibromyalgia, I used to just think oh it's the shifts or it's such hard work, no wonder I'm tired. Also, I know the stress that comes with the job and this is so bad for us fibro sufferers

When I retired I thought I'll feel so much better but I don't .... and it's all the fibro symptoms saying, hey, we've been here all along, you just didn't notice or ignored us!

In other words, I feel like the job totally ruled me and I kind of regret how I basically neglected myself now ..

I just wanted to tell you my take on it, in case it might help you in any way

Take care of yourself 🙏

HL1988 profile image
HL1988 in reply to crochetjoy

I am very much struggling with the fact I haven't been able to work in a year but I always had hope I would get back to nursing after my symptoms are controlled but when I got told this isn't the case my heart broke. I was always meant to be a nurse and now I sort of feel what is my purpose.It is a hard job and we are told to loom after other people but not ourselves. Maybe working harder since covid had something to do with things but then I see it as I was just doing my job.

Things are difficult to understand and process at the moment

Holly x

crochetjoy profile image
crochetjoy in reply to HL1988

Hi again HollyThings are just so new and raw at the moment and it may take some time to come to terms with this diagnosis, I understand

Treat yourself with the care and respect you deserve, the same as you would do for your patients

For example, what would you say to a patient who was in your position

I realise it's not all just as simple as that at all .... take time to absorb everything

Hope this forum is helpful to you

JayCeon profile image
JayCeon

SnazzyD , Gigiruth and crochetjoy : Thank you, such brilliant replies about self-care instead of self-bashing (your body is you)! Standing on the shoulders of you 3, so praps you may want to chime in and colour the following:

HL1988: I'd think yes, nursing is a hard job, and it's about caring for those who need it most. In this case you. They were wrong: it's not just about other people. Can't care for others if you don't care for yourself. Learning this is an important care lesson. You're back in school, learning what real care is and can apply it very practically. Only if you do that might you be able to apply it to others again too, first others here by sharing and caring, then others elsewhere.

I'm not a nurse, but a carer, helper and sharer. Similarly, mine's a hard job and I've learnt to make it my dream job. Now I'm on long term sick leave for the second time, despite 3 kinds of disability, due to MCAS-jab-sfx, and it's possible I won't get back. But I'm now "studying medicine", reading sites and studies, and applying all my knowledge on the forums and people I know - so 1) something related to your job (and 2) something I've always been interested in doing, but never had the time). Plus 3) despite the sick leave I'm helping my colleagues from home, phoning, mailing, organising. So maybe these are three routes waiting to be discovered by you?

crochetjoy profile image
crochetjoy in reply to JayCeon

Yes, nursing is one of those jobs that you can take in many directionsIt takes a good amount of time I think to figure out your role in life and its not easy to adjust sometimes or accept change

That's just some of my thoughts, a big big subject

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