What to try and in what order?

[Klfah]

Hi l am new here and recently diagnosed. I am reading everything l could try to alleviate my symptoms and it feels like a huge list of things to do and try. Should l start everything or phase what l try to see what works? Thank you for any advice on how to make a start, what with and what is worth investing in. Thanks

[LoneEra]

Hi, yes it can be overwhelming. Some things work for one person but not another.

I would recommend starting each thing you try separately and keeping a diary each day of how you feel. This will let you see a bit better what’s working and what isn’t.

There’s no need to buy lots of expensive tools or pills. Some of the most important things are free 😀 My personal top 3:

- Movement. Try these stretches as many days a week as you feel able: youtube.com/watch?v=fONfo3O...(Not working as expected?)

- Activity pacing. painhealth.csse.uwa.edu.au/...

- Reducing stress. You could try mindfulness:

royalcornwall.nhs.uk/servic...

The one thing I would buy is some Epsom salts for relaxing your muscles in the bath. No need to buy expensive ones - the bargain shops sell them 😉

Hope that helps x

[Midori]

Experiment, no two people are alike; what works for one may not help another. Fibro is a journey, a long one. I hope you find some answers soon.

[saluhouse]

Hi Klfah. Everyone in here understands and sympathises. None of us wanted to join this club - we’ve all been forcibly press ganged!

My advice is pretty simple - invest in a book. Just my opinion but Fibromyalgia for Dummies is the best one to start with. It’s an easy read but gives you all the information to get a grip on a very complicated and debilitating condition.

Otherwise keep reading the posts on here. You will gets lots of help and information from experts who really know their stuff. Not professionals - but real people who will never tell you to pull yourself together!

Best wishes xxx

[Misslostmarbles]

The only real thing that works for me is learning my limits and acting accordingly. Being kind to yourself is also really important. I also take my pain killers.

[JayCeon]

Klfah - as you are reading a lot already I assume you mean more how to take on the long list of ideas than looking for even more.

This has got long, so I'll put the bottom line first: Prioritize your symptoms, prioritize your list of treatments, listen to yourself, your body and people who know you well. And then ask them & us questions what combinations of treatments might be OK.

My take on it is to start with the diary LoneEra suggests to sort out what symptoms you want to get a handle on first - your personal priorities. I'd started pain, sleep, GI and bladder diaries long before I knew it wd turn out to be fibro.

Whilst my full flare was building up I was trying all kinds of herbs (& supps) at the same time for pain & sleep, none worked. What docs recommended made everything worse. What friends who had no idea of fibro suggested helped most, funnily enough - but maybe that's why they're my friends. Books didn't help me much either btw, a nice addition. Suggestions of an acquaintance of a supp protocol (B12, other B, minerals) for fibro helped nought. Bottom line of that, at least in my case: Don't try the things first which people suggest who don't know you. And listen to the person who knows you best: yourself. And if you don't know your new self yet, listen to your body. (Diaries, pacing, self-care etc.)

After 6 months I came to the temporary end of my list of treatments, cryotherapy. And after one or two fails, that came to be the only thing up to then that helped (apart from environmental things like blackout curtains, ear plugs) for quite a few months. Then that same therapist added acupressure: That helped more than the osteopath before, she was the first person who really listened well to my body. She also had fibro herself...

Around that time I'd tried about 60? treatments in 8 months. 2 futile, harmful weeks in a rheum./fibro-clinic built up the desire to find people on the net who understand more, who listen and who I can listen to, build up a relationship, know who is like me, and then found the forums (I was actually looking for mailing lists, like in the 90s). Their help is increasing, trying ozone injections didn't help, but now GABA. I'm up to 75 treatments.

Oh, I'm gabaling on a bit, sorry.

Lastly: So one after the other? Well, a lot of the treatments especially meds, were one off, my reactions were much too intense. Other treatments didn't work anyway, so I used them parallel. Supps & diets I all did for 3 months. If things are on different levels and you're as desperate as me, you won't always want to wait to see if one thing alone works after 2 months... There are quite a few things you can do parallel to each other. If I realize something is starting to work, then I do experiment a bit with dose etc., but also check with others if anything else I'm doing is interfering. So my acupressurist rightly wanted me to stop osteopathy, altho that was working too, but acupressure was just better. She also doesn't like me taking any meds if possible, but some I have to...

[Klfah]

Thank you all, this site is wonderful.