Hi, I'm new here and the last month has been a real struggle!

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Chase

New member
Joined
Sep 17, 2021
Messages
2
Reason
DX FIBRO
Diagnosis
03/2019
Country
UK
Hi, I'm new here and the last month has been a real struggle! Have recently changed doctor's and explained to him that I really am lost at the minute and really struggling to cope with the symptoms, which he replied there's not much you can do with fibromyalgia! Luckily I have a referral to the pain clinic. I've tried gabapentin/ pregabalin/amitriptyline etc. In the past with no luck. I have read about Milnacipran and LDN, just seeing if anyone has any advice? I'm currently managing pain with the usual recommended supplements and paracetamol/codeine. Any help would be much appreciated!
 
My best advice is not to depend on doctors or medications to do all the work for making you feel better. You need the doctors, and you may need medication at times, to me sure; I am not anti- doc or meds. But mostly what I and many others have found is we need to take charge of our health ourselves and do everything we can to help ourselves.

I've put all my best advice on that into one post. Some people have found it very helpful, and I personally have taken my own advice and have gotten much better in terms of depth and frequency and duration of flares of pain.
I hope something there will appeal to you to try, because all of those things have a good chance of improving things for you.
 
Welcome Chase! Do what you can, when you can & bugger the rest. Those meds you mentioned have done nothing for me either. I've managed to get Tramadol, which doesn't do much for the day to day aches & pains but it does allow me to get some (less) broken sleep. Now I know that's not what it should be used for but meh.. it works for me.

Stick around fella.. Tell us your woes & we'll share ours!
 
Hi, I'm new here and the last month has been a real struggle! Have recently changed doctor's and explained to him that I really am lost at the minute and really struggling to cope with the symptoms, which he replied there's not much you can do with fibromyalgia! Luckily I have a referral to the pain clinic. I've tried gabapentin/ pregabalin/amitriptyline etc. In the past with no luck. I have read about Milnacipran and LDN, just seeing if anyone has any advice? I'm currently managing pain with the usual recommended supplements and paracetamol/codeine. Any help would be much appreciated!
Hi Chase,

Welcome to the forum!

Sorry to hear that you've been having such a hard time. I also found conventional meds useless, and have now learned to manage my symptoms really well without them. For a long time, I was in a really bad way - mostly bed bound with a lot of pain, fog, and even blackouts. The turning point was learning really effective stress management, getting pacing/lifestyle down, accepting my condition - including that it isn't a threat to my safety - and experimenting until I had s stack of supplements that help.

Now I'd say my symptoms have settled at about 30-40% of what they used to be. My brain is functioning, and I can work again. The point is, it can be done!

If have a really good read through here in the forum of what people are doing to manage fibro. Sunkacola's linked post above is great.

Do you feel stressed by your symptoms, and afraid of them? If so, getting on top of this is a must. When you're constantly in a stress response, your symptoms will be retriggered endlessly. Mediation, mental body scans, and breathing exercises - all with the "no threat" idea in mind - helped me sort that out.

For supplements, I take CoQ10, ALA, and acetyl-L-carnatine for fog/energy; boswellia for pain/edema, magnesium glycinate for sleep/anxiety, and lithium orotate for depression. A lot, I know! Others take things like GABA, melatonin, and more - very personal, but if you're interested to experiment, best to read up and then try one thing at a time, sticking with what works!

I'm also really curious about LDN, but haven't managed to get in front of my doctor recently. If you use the search function here in the forum to look for "LDN" you'll find lots a lot of discussion about it.

GrumpyGit mentioned tramadol above. Some people find it really useful, but keep in mind that - like any opiate - it's addictive, so be careful if you go down that road!
 
Thanks for the support, I'll hopefully update once I've had the chance to discuss things with a pain consultant.
 
I know I am just going to echo what you've been told already, but really, it cannot be said enough.

Pay attention to your body, it's the greatest benefit to dealing with fibro you will find. Since it is so highly personalized, your reactions, observations, they will be the best guide, not a doc. It took a while, but stopping the doc and script merry go round not only left me feeling better but gave me more confidence in living and dealing with my DX.

I hope you have a good experience with the consult, I wish mine was more positive LOL but I will hope for you!!!
 
I know I am just going to echo what you've been told already, but really, it cannot be said enough.
In my opinion, it cannot really be said too often, because it is always a bit different with each person's experience, and it is good for a newcomer to know that this advice is echoed by many people.
 
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