How to cope with a diagnosis...

[jarbnsnmelts]

Hi everyone,

I'm new here and was diagnosed recently with fibromyalgia after the best part of 12 years suffering with daily pain and severe pain during flares, I finally received an answer about why I have been dealing with this for so long. I mainly experience pain in my lower back which is daily, but does flare and become unbearable some days. I get pain in my knees which means I can never get comfortable when it happens. My most recent symptoms and what prompted me to seek medical advice, begun happening after my father-in-law passed away very suddenly, were excruciating migraines, nausea and a complete lack of energy which after a few hours would pass as though it never happened. I've never slept well, so I know this is part of my fibro as a whole.

I am struggling now to deal with my diagnosis and my life going forward as even though I have received an answer, there isn't anything that can be done about it, except learn to with it and accept it, but I'm finding this very hard to do.

Does anyone have any advice they can offer that helped if you felt a similar way? I have sought out support groups in my local area also.

Thanks for reading x

[crochetjoy]

Hello 🖐I do feel for you as you are fairly young, however, if you can at all see it as a positive to be diagnosed now and that means you can begin to get the proper help that you need?

There are lots of different ways to treat fibromyalgia and there is more and more being learned about it

Please do not think I take this lightly as I know it is different for everyone how they react to things, but just wanted to put my perspective for you

I am well used to my diagnosis of course as I have known about it now for about 7 years so I do realise I have the benefit of having gone through the initial adjustment - give yourself plenty of time and get lots of advice from your medical doctor to start the ball rolling with help

Kind wishes to you with it all 💜

[Macaulay1]

Hi, sorry to hear you sound desperate, I have been there thinking really negatively. I despaired for some years thinking there was nothing I could do and this was a life sentence. I then started researching and discovered things that help. I found a consultant who was doing research into our condition and I applied to be part of it however I lived too far from the hospital to be included but he very kindly sent me the programme. Basically it is guided exercise. You choose some activity that you can manage and do almost every day. In my case I have a treadmill so I did that, some of the case studies did a walk and so on it doesn’t matter what you choose. Day one you do just what you can without forcing yourself too much. In my case it was 2 very slow minutes on the treadmill. You repeat this at least 5 days out of the week not increasing it just the same time and effort. At the end if 7 days you increase it by no more than 20% in my case to 2minutes 20 seconds. Again repeat and at the end of week 2 increase it again. You continue this and increase it gently every week and in time I was 20 minutes at a slightly high pace. At first its hard and takes energy you don’t feel you have but stick with it and you will slowly find you sleep better and generally are less tired. I now after many years just make sure I do a certain amount of steps a day and go on the treadmill only when I have had a very sedentary day. The other thing that worked for me was a low carb diet. By this I mean easy accessible carbs like bread pasta rice etc. I increased my intake of protein and vegetables and dropped the potatoes, its weird at first and no sandwiches is sometimes difficult. I did this initially to lose weight but found I was less tired and had less pain. I then heard the hospital were now recommending a low carb diet for fibro sufferers. What all this did for me in addition to easing the pain and helping me sleep better made me feel I could do something to help me get out if the misery of FM. Its not a cure I still have bad days..weeks etc but usually if I have slipped off the wagon so to speak. Trauma such as losing someone amongst many other things does still trigger flares but I no longer feel helpless I get back on the exercise programme cut the bread out (I find no bread the most difficult) and things do improve. You are young and you can control the worst of this condition so don’t despair give this a try. Good luck.

[Dinkie]

Hi, I know how difficult it is to try and see anything positive when you are in pain but honestly you can and will learn what works for you and how to adjust so that you can live your life maybe not as you used to but still in a fulfilling but different way. I speak from experience as an ex foster carer, dog trainer/breeder and in employment. My employers made an appointment for me to see occupational health for an assessment. I didn't want to but have to say it has enabled me to stay in employment due to the reasonable adjustments made. Foster caring had to go as I hadn't got the physical or mental strength to do it anymore.

Firstly, not sure where in the world you are but if you can try and get a referral to a fibro clinic. I went to the one at Guys and St Thomas's, a one off appointment but I saw several different people, from rheumatologist, physio and psychologist they all then put together a plan to send to my GP. It was a great relief to go to the clinic. It was the only place I felt I was believed and that they actually wanted to help. The only advice I got on diagnosis was have a positive mental attitude and we don't treat fibro at this hospital so we are now discharging you back to your GP. If you wish to request a referral to a clinic then my advice is to put it in writing to your GP that way it forms part of your notes and can't be overlooked. Then follow it up with a telephone consult to make sure the referral is being done. I learned the hard way but once I put it in writing and had a meltdown during a telephone consult it was done immediately.

I've found it really difficult to accept that I can no longer compete with my dogs. My mobility isn't what it was, so to stay with my hobby, I trained as a steward and now sit at the judges table collating results. Keeps me meeting my friends and feeling useful.

The art of pacing is one I struggle with and its been a learning curve but for me I know if I have something planned at a weekend then the two days before and the two days afterwards I do very little, that way I don't crash and burn after the event.

Its really hard to see any light at the end of the tunnel particularly with what has gone on in the past couple of years but you have made the first steps by posting on here. There are some lovely folk all willing to help and listen, no question too silly to ask as you can bet someone has thought it or asked it before. Sorry for the long reply. Keep your chin up.

Dinks