Fibromyalgia

Hi there, i thought id reply because there are certain things youve said that struck a cord with me. i was diagnosed with Fibro back in 2009, i later got my EDS diagnosis and awaiting my assessment for autism. i think ive learnt that regardless of the name they give it, chronic pain has the similar effects mentally, not just physically. i too went through pain clinics and as much as i dismissed them at the time, they have been extremely helpful - just try and switch it up to work for you personally, whats right for you, is right for you and perfectly ok. the biggest struggle for me, was loosing that old version of me - indeed its grief, grieving who you were and grieving the future you thought was set in stone and now to top it off...all that fab energy is gone! i would say it takes time and acceptance. heres the wonderful thing to look forward to - it will all improve with time, help and patience. its all chaotic as its new, right now. im here to tell you, it does pass, i sympathise totally and remember when i felt like this - "i HAVE to do something/anything to get me out of this nightmare". going forward, you'll prob form a different relationship with your body and i found that is key - only so many people can 'tell' you whats best. im from the work hard, dont complain similar type of family, so i know how this culture can be both helpful and unhelpful - unhelpful for self-blame/laziness, but helpful to pull yourself up/keep going at the slightest glimpse of a lower-pain-day. so to answer your question diet (can be extremely hard), pacing, accepting help from others (BIG hurdle for me) and importantly recognising personal achievements no matter how small. oh and second the knee pillow for sure. 

Thank you for your interesting suggestions. My diet is good having dumped junk and most processed food a couple of years ago, I am considering both acupuncture and hypnotherapy which I’ll discuss with my fibro team next week. I am learning about my triggers as you suggested, well Im trying to but tbh there isn’t a clear pattern yet, hopefully in time I’ll find clarity on this. Id be interested to learn more about turmeric if you could advise, I have some friends who have also suggested it but I’ve read too that it needs to be consumed in larger quantities than can practically be achieved to be effective, it’s the scientist in me always on the hunt for proof and facts. Thanks. 

The fatigue and Brain fog get better I promise. Although it’s not linear. Diet is a huge one here! Take out processed junk food, get yourself some celery juice, seaweed, salmon, organic vegetables and fruit (I buy them frozen so they last longer), spirulina and wild berry powder for smoothies, lemon balm tea is nice. 
I avoid corn, gluten, overly yeasty products.

It gets better. I know there’s a depression that hits with the grief of your once easy, healthy body but im so used to it only on the bad flare up days I cry now. Sending you lots of love and support 

• Hi Emma, I have both as well. I’m very sorry to hear you’re dealing with this. It takes time but eventually I learned how to manage it. I’m still always in pain but I have ways to keep it bearable. The beginning years are the worst in my opinion as the new symptoms appear and you’re learning to navigate them. This is what I do:

-turmeric with black pepper supplements. High quality, organic. I stopped taking NSAIDS. Don’t mix the two  

-acupuncture every week. Takes a while to find someone who knows what they’re doing but face down is best and avoid trigger point (tends to produce soreness and a worse flare up). Personally, massage backfires on me each time. I hate needles too but it’s not too bad if the clinic and person is calming. 

-ice packs in the morning. I have some with straps so I can put them on as I get ready. 
-20 min of stretching in the morning and at night. This includes my physical therapy exercises and some yoga poses. At first, you might benefit from PT and learning what to do and then eventually I memorized the moves and could do independently. 
-I like rubbing MSM gel in on my worst days over CBD oils. You can have someone massage you as long as they don’t go too hard. 

-lavender essential oil mixed with body lotion at night is nice too. 
-red infrared light and acupressure mats are nice although not necessary. I found reiki helpful as well if you want to give it a shot  

-you might benefit from a knee pillow if you sleep on your side and have hip pain. 
-supportive house shoes i. e Birkenstocks. Good for the back  

-notice your triggers for flare ups. For me, heavy lifting, lack of sleep, catostrophizing things, trauma memories, stress before travel, lack of exercises, and my period.

I hope this helps a bit and you find what works for you! Take care of yourself <3

You are very welcome!

Thanks AA xxx

Hi. I don’t have any lived experience advice about fibromyalgia.

However, I found a book called ‘All Tangled Up in Autism and Chronic Illness’ which you can preorder from Amazon. It may have some useful lived autistic experiences of fibromyalgia included or some helpful coping strategies like Spoon Theory.

All Tangled Up in Autism and Chronic Illness: A guide to navigating multiple conditions https://amzn.eu/d/6pHbRVx

I hope you will find this and the psychology sessions for pain management useful .

Thanks Taltunes, I’ve learnt quickly that pacing is a key skill, and not one I’ve previously been good at, well rubbish actually. However I’m working carefully on it every day and it definitely helps. I’m getting a lot of help from the local fibro team, heaps of inf, there’s a short awareness course I’ll do and they are starting 1-1 psychology with me around pain management later in the month. Xxx

I don’t have fibromyalgia but I’ve a friend who does and I did a half-day course on fibro at a local nhs trust. I’m sure I don’t have to tell you but the most important things seemed to be to pace yourself, not overdo things and get plenty of rest.