Struggling with my new Diagnosis

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Jade1993

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Good Afternoon, Im Jade im nearly 28 years old and got diagnosed with Fibromyalgia 6 weeks ago. I m struggling on how to manage my pain as my Rheumotologist has suggested i dont continue with my pain killers as they were not really helping. Does anyone have any suggestions on how i can manage my pain as it is really affecting my daily life and also sleeping to. Thankyou in advance
 
Hi Jade,

Welcome to the forum - we're happy to have you here!

I'll start by saying that your rheumatologist is right - painkillers often don't help with fibromyalgia, and at times can even make things worse, so looking for other approaches is always a really good idea.

I don't know how much you've read up on fibromyalgia so far, but for most of us the crux of dealing with this condition is self-management. So, that means learning to lessen the triggers of our symptoms, as opposed to treating the impact of them. Sadly, there are no perfect fixes, but there are some things that can help. We're all a bit different, but you'll find some useful pointers here towards where to start. I really recommend checking out Sunkacola's pinned post at the top of the General Discussion section of the forum - she wrote a great guide to the basics of fibromyalgia self-management. You can start and build up from there. Things like pacing, sleep hygiene, experimenting with diet, stress management, light exercise, and mindfulness practices all can help - probably more than you imagine!

I remember how scary receiving this diagnosis was, and all of the emotions that come along with recognising that things will likely never go back to normal again - please know that you're not alone in this, and come and talk to us if it ever gets on top of you. The good news is that with some work on acceptance and learning how to find the edges of your new limitations, you are probably going to feel much better than you do right now - both mentally and physically. It can really feel like life's been turned upside down to begin with, but you will get your sense of control back as you find your way.

There are various prescription medications used to treat fibromyalgia, such as duloxetine (Cymbalta), pregabalin (Lyrica), amitriptyline (Elavil) and milnacipran (Savella). Some people have great luck with these medications, but unfortunately not the majority. Each one tends to come with various side effects and potential withdrawal symptoms, so if you decide to go down the prescription route I recommend really doing your homework, so you know what to look out for. Forewarned is forearmed!

A lot of us have made small breakthroughs taking various supplements and through alternative therapies - so do have a poke around the forum to see what people are trying and where they are finding success. It's kind of a case of making yourself a guinea pig, and experimenting until you find something that works! When a handful of things each take the edge off a little bit, it can stack up to a really big difference overall.

Please ask away if you have any specific questions, and we'll do our best to answer. Or, just vent whenever you feel the need. This crew understands what you're going through 🌷
 
Welcome Jade! I currently use supplements of B12, Vitamin D, and Fish Oil. They seem to help alot. I also take Cymbalta and Gabapentin.
I hope you find this forum useful. We're are all in this boat together!
 
Hi Everyone. I am recently diagnosed with fibromyalgia and am trying to understand how this diagnosis interfaces with known "mechanical" pains in areas like having calcified hip muscles (both muscle groups), compression fracture t4/5 that was not treated correctly (bone has healed but not together), damaged nerves to both feet from spinal crushed nerves surgery (better than it was so a success as far as I am concerned) etc. I am somewhat confused as my pain specialist is ignoring these pains that the neurologist & orthopaedic surgeons/specialists have explained to me as being genuine and need to be addressed in conjunction with the fibromyalgia diagnosis, not ignored. Does anyone have something similar happening? I don't want to doc google this and possibly get wrong info or get overwhelmed. Any help at the moment would be appreciated so that I can wrap my head around what is going on. 2 different opinions..and I have just started this journey. TA
 
Hi Everyone. I am recently diagnosed with fibromyalgia and am trying to understand how this diagnosis interfaces with known "mechanical" pains in areas like having calcified hip muscles (both muscle groups), compression fracture t4/5 that was not treated correctly (bone has healed but not together), damaged nerves to both feet from spinal crushed nerves surgery (better than it was so a success as far as I am concerned) etc. I am somewhat confused as my pain specialist is ignoring these pains that the neurologist & orthopaedic surgeons/specialists have explained to me as being genuine and need to be addressed in conjunction with the fibromyalgia diagnosis, not ignored. Does anyone have something similar happening? I don't want to doc google this and possibly get wrong info or get overwhelmed. Any help at the moment would be appreciated so that I can wrap my head around what is going on. 2 different opinions..and I have just started this journey. TA
Hi Norma22,

I can't speak to your issues specifically, but I do agree that it's really important to tease apart pain sources, as different treatment approaches will be needed, and can build into a strategy that comes at things from every angle. I have a damaged spine and worked with a specialist and physio to get a handle on that pain - but needed totally different things for the fibro side. That said, as I got a handle on the fibro pain, some of the pain that I thought was from physical sources improved. Some people do experience quite extreme pain amplification from fibro. The interactions between these things are so complicated.

Your pain specialist ignoring the advice of other specialists does sound a little worrying! Can you perhaps get your neuro and ortho docs to put their recommendations in writing? I think if your gut says these things need to be tackled individually, then you're probably totally right! I hope you get the support you need.
 
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That is a good idea to get the ortho & neuro comments in writing. Every pain I have is explained so was stunned with the fm diagnosis. Have no aches, general pain etc. I'm going to ask a lot more questions of the pain specialist now that the shock has worn off. My gut has worked well in the past & I trust it. Thank you.
 
Norma, this apparent contradiction might not be that much of a problem in that the pain specialist's view and treatment wd not be different either way - on the one hand relying on the others to do their bit, on the other actually just regarding all this as the genuine pain it is (incl. FM of course... ;-) ) and looking at it using pain management ideas. For us it is the decision if we really need do need the meds & put up with their side effects (sfx) or find various other ways to alleviate and cope with the pain so we can get a life on this new level.... Make any sense?
 
Thank you Jay. I have spoken to my gp & specialists and they all agree that I can have pain associated from such things as calcified muscle in my hip & have fm along side known pain causing issues which I couldn't quite understand the how type of thing. One issue that has been raised by them relates to the loss of my husband earlier this year (died of a very rare condition) and having cared for him for 2 years with the final 6 month being nothing short of hell due to so few medical people even having heard of his condition, they have all raised the point that because I was running on fumes, having to fight for basic needs, research the condition etc., this would all have contributed to masking the fm issue as separate from the pain, grief (pre & post death), etc that I have had for upto 30 years. I am slowly starting to understand things a bit better and working with my Bereavement Counsellor also, I am starting to see & understand why my grief as I put it is more a depression which I thought was 100% because of Mike's death but in fact makes more sense now if I truly have fm. Massive learning curve and the specialists all agree things are now making a bit more sense to them including my lack of dependency on the opiods I have been on for 20 yes...I have had no increase is dosage nor require them every day yet they are effective on some of my pains. They all agree however that due to my inherited bone and muscle conditions, I cannot afford to be dependent on drugs to the extent of masking issues...ie I had ripped both of the major tendons from my hip and from just above the knee all the way up on my thigh bone that took 3 yes before a specialist diagnostic orthopaedic found the issues..nothing showed up on mri's, cat scans etc and the pain I described one way which was not the "normal" nor the fact that I was still getting around. It appears I do not recognise pain normally and why they are all insistent that the fm be treated with utmost care in recognition of my biological make-up re bone/muscle. Am finding this forum etc very helpful and starting to see that the whole picture of my weird body is starting to come together. Thankyou for having such a place like this to assist me on my journey and the final answers it appears to so many questions.
 
HI
Nothing seems to help a whole lot but I know I am worse if I don't take B and D vitamins. They seem to help some atleast. You are young enough that you could try guaifenesin. It supposedly reverses fibro but primarily helps women and did nothing for me except rollercoaster my symptoms. I have heard enough people getting results that it is worth a shot. Good luck.
 
Good Afternoon, Im Jade im nearly 28 years old and got diagnosed with Fibromyalgia 6 weeks ago. I m struggling on how to manage my pain as my Rheumotologist has suggested i dont continue with my pain killers as they were not really helping. Does anyone have any suggestions on how i can manage my pain as it is really affecting my daily life and also sleeping to. Thankyou in advance
Hi, I had fibromyalgia for decades. New pain doc Dr. Sami from Torrance memorial pain center introduced me to LDN. I have been symptom free for almost a year. I started with 4.5mg and increased to 9mg due lingering symptoms in month two. That dose completely took all symptoms away! Please look into it and spread the word. I wish I knew about LDN sooner. LDN Trust website has more info.
 
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