Newly diagnosed with fibro

[Rex]

Hey there!

Thanks for taking the time to read my intro post. I'm newly diagnosed with fibromyaglia, and don't really know anyone else in real life who has it. So it's kind of been a confusing journey to say the least? I was diagnosed in February 2022 by my primary care provider, but I am considering seeing a rheumatologist just to be sure that the diagnosis is correct.

I have a lot of overlapping medical conditions, which I know is not entirely unusual. So it makes it hard for me to figure out what is the fibromyaglia, and what is part of the other conditions I experience. I am diagnosed with depression, anxiety, ptsd, and migraines, however they are all very under control and I have put in a lot of work to maintain my health. My migraines flare sometimes because of triggers I come into contact with, like strong scents, but other than that I do ok for the most part.

One thing I was wondering is if any of you think I should see a rheumatologist if my fibro symptoms are mostly under control? I used to get terrible brain fog, body aching like I got run over by a car when waking up in the morning, tender joints (mainly my wrists, hips, and knees), and a lot of chronic pain, but it seems to have improved. I don't want to seek out a specialist care if I'm doing ok, but I kind of question my diagnosis a little bit. I don't feel very comfortable with my primary care provider giving me the diagnosis without further inspection into my history.

I'm only 26, and I have a long history of trying to find an answer for my chronic pain that started when I was about 21. Out of nowhere, I began to experience pins and needles in my skin when I got too hot or would exercise, and it felt like my body was being poked by really tiny needles that would move all around my body. It would poke, itch, and then kind of burn. I saw so many doctors...like an allergist, a dermatologist, a neurologist, and a psychiatrist. Everyone kept telling me I was healthy. It was super discouraging because I didn't feel fine, and I couldn't exercise anymore after it started happening.

I was put on gabapentin, and it literally changed everything. My pain improved substantially, and I think that's partly why my fibro diagnosis is accurate. I was also put on cymbalta prior to knowing I had fibro for pain, but I had side effects and came off it.

I guess I'm having trouble coming to terms with believing that I have fibro. I mean...I'm confident that I do. When I have a fibro flare, it's pretty clear. But I still feel kind of in denial about the whole thing. And I don't really have anyone in my life who truly understands what it's like. I remember being in college undiagnosed with fibro and feeling incredibly drained, and thought that I might have narcolepsy. I couldn't stay awake during the day, and I was soooo foggy. I kept telling people in my life it felt like I was living in a haze, but I don't think they really believed me or knew what I was saying.

Life is so much better now, and I exercise multiple times a week, and I'm able to do yoga. I am thinking about trying acupuncture soon, so I am hoping that will help as well. I apologize for the wall of text, and appreciate any time you've taken to read this. Like I said, I don't have anyone in my life who has fibro, so it means the world to me to be heard from someone who's on the inside of it all.

Wishing you all well,
- Rex

 

[cookiebaker]

Hi Rex, and welcome! Understanding, empathy, and general support are what we offer here.

Sounds to me like you have things pretty much in hand and are mostly doing well, which is great!

I don't feel very comfortable with my primary care provider giving me the diagnosis without further inspection into my history.

I saw so many doctors...like an allergist, a dermatologist, a neurologist, and a psychiatrist.

sounds to me like you have had a fairly thorough investigation, but it never hurts to rule out other things that could potentially be far more serious. The "pins & needles" feeling can be caused by a number of different things. For me, it is a result of osteoarthritis irritating/impinging on nerves in my neck and lumbar region.
FWIW, your GP can order the same tests that a Rheumatologist would.. mostly looking for inflammatory markers for things such as Lupus, RA and the like, so not strictly necessary to see a specialist, but if it would make you feel better about things, then by all means follow thru. I would also suggest getting vitamin and mineral levels checked out if you haven't yet.. B vitamins especially are connected to nerve function.
Also would suggest a Lyme disease test, if you have not had one, to rule it out. (all of this is simple blood work)

I was tried on gabapentin, but it did pretty much nothing for me.. was also tried on duloxetine and nortriptyline, neither of which helped much and gave me some nasty side effects. was also tried on several SSRIs for anxiety/depression.. none of which really helped.

it is not terribly uncommon to go thru a denial phase with a fibro dx, so dont feel alone there.
for me, it was more a feeling of relief.. i could finally put a name to what i was going through/feeling. It was not all in my head, and I was not crazy... even tho i suspected fibro for a long time, just to have that confirmation was liberating.

Keep up the good work with the exercising and yoga!

 

[Cutiegirl]

Hi Rex, I am new on this forum as well. I am also uncertain if my fibro diagnosis is correct. I am learning a lot on this forum. I noticed you mentioned acupuncture? I am wondering if if it has made a difference to anybody here? It is an option that I can pursue that is covered under my benefits.

 

[JayCS]

I agree fully with @cookiebaker regarding bloods, not really a rheum etc.

I can only add a few small things...

Denial: ...that even those of us with severe fibro who have grieved and radically accepted can have moments where we feel OK, and then like to jump to the conclusion it was all a dream.... I never/won't have a problem with "getting better"...

... what if you coin your own name or phrase for what you have got....? Like "on and off...", "sort of...", "preliminary..." "mild" fibromyalgia, or just "bouts of pain". Test questions might be how would you summarize it without using the f-word? How would you explain it to others? Would your 'inner child'/self you're sposed to be self-caring for agree that you haven't got it?
We don't need the name here, but it's pointed us here, as well as helping with prescriptions, disability etc....

Acupuncture (also @Cutiegirl) is worth trying, it even has a certain amount of medical evidence for helping with fibro.
It doesn't seem to help most, I'd think a quarter, but that's quite a bit considering - something like gabapentin, which helped you....
In my case several trials with acupuncture by various docs harmed me, caused severe Ache,
but Chinese acupuncture with thicker needles is now helping with fatigue and associated Ache and not harming at all (not counting the odd "ouch").
But also don't forget the 20 other types of expert and self-applied PT - my favourites being acupressure, short sharp cold showers, a massage gadget ('gun') next to of course all kinds of exercises, stretches, breathing, Yoga Nidra...oh, they're all my favourites I spose...

 

[Cutiegirl]

I will look into it. Thank you.

 

[Rex]

Wow, thank you so much @cookiebaker, @Cutiegirl, and @JayCS for the warm welcome.

your GP can order the same tests that a Rheumatologist would.. mostly looking for inflammatory markers for things such as Lupus, RA and the like, so not strictly necessary to see a specialist

Now that you mention this, I agree with what you are saying. My GP did order tests that looked for inflammatory markers, and they were all good. My ANA test was negative and I didn't show any signs of inflammation. I know that I also took an ANA test a few years ago before my fibromyalgia diagnosis because I was having joint pain, and it also came back negative. You are right that I have done a lot of searching and ruled out a ton of different diagnoses.
I will consider those blood tests for Lyme disease, because I haven't had that one yet. All of my vitamin levels are normal since my last full blood check during my fibro diagnosis. I think that's the last thing I haven't checked for, but I'm not tooo concerned about it. Always good to check, though.

I was tried on gabapentin, but it did pretty much nothing for me.. was also tried on duloxetine and nortriptyline, neither of which helped much and gave me some nasty side effects. was also tried on several SSRIs for anxiety/depression.. none of which really helped.

Also, sorry to hear that nothing has been working. That is super frustrating, and I know that feeling of constantly searching for answers and not quite finding a good fit. I have hope that you will find something that works for you one day!

it is not terribly uncommon to go thru a denial phase with a fibro dx, so dont feel alone there.
for me, it was more a feeling of relief.. i could finally put a name to what i was going through/feeling. It was not all in my head, and I was not crazy... even tho i suspected fibro for a long time, just to have that confirmation was liberating.

Thank you, that is comforting. I did at first feel very relieved, because I didn't feel as...crazy like you said. Like I wasn't making it all up and I wasn't just lazy. But then as I got healthier I started to doubt myself, and then I read stigmatizing stuff about fibro trying to learn about it. Like when people call it a waste basket diagnosis. I think I'll take it one step at a time!

I am wondering if if it has made a difference to anybody here?

I am hoping that acupuncture will make some difference. I am approaching it with an open mind, and figuring it can't hurt to try. I am still trying to find a provider, so we will see how that goes.

moments where we feel OK, and then like to jump to the conclusion it was all a dream.... I never/won't have a problem with "getting better"...

I resonate with this SO MUCH. Especially with my depression and anxiety. It's hard to comprehend that there were moments I would be brought to tears with the pressure of making a sandwich, and now I work full-time again. It makes it feel incredibly unreal and like it isn't "me". And the questions you gave to consider are amazing. Thank you. I'm going to take some time to reflect on them.

PS. JayCS your meme was fab, and it made me laugh so much. Incredibly relatable.

I will look into it. Thank you.

Let us know how it goes and if you decide to go through with it!

Best,
- Rex

 

[cookiebaker]

Also, sorry to hear that nothing has been working. That is super frustrating, and I know that feeling of constantly searching for answers and not quite finding a good fit. I have hope that you will find something that works for you one day!

nothing prescription based has been helping (so far)..
I have made some dietary changes that have helped a little, and looking at further changes to see how those go (gonna be hard, but if it means feeling better, then i can & will do it!)

my biggest challenge at the moment is on the exercise side of things... with the arthritis & structural issues in neck and lumbar spine, it is a big challenge to get up and get moving.. with winter coming fast it is going to be that much harder.. and living way out in the country, not close to anything makes it that much more difficult... but, one day at a time, right?

on the vitamin/mineral side of things.. I found out out that i was seriously low on Vitamin D.. normal levels are, on average, between 30-50ng/mL - mine was down to 8 - and guess what the symptoms are for low Vit D? Fatigue, not sleeping well, bone pain/achiness, reduced endurance... and so on.. all very similar things to Fibro... increasing my D levels (back up into low 30s at last check), while it did help a little, did not make all of those things go away, either.
I am also low on Ferritin Iron (the typical Iron blood test would show "normal") - which also contributes to fatigue, among other things.
Neither of these are commonly tested for in normal, standard blood work.. so might be worth asking about at your next checkup.

 

[sunkacola]

Also, sorry to hear that nothing has been working. That is super frustrating, and I know that feeling of constantly searching for answers and not quite finding a good fit

Sometimes no medications will help enough to make taking them daily worthwhile. but that doesn't mean all is lost.

The best way to manage fibromyalgia doesn't lie only in medications. You can do a lot to learn how to manage it yourself. I did this and it made all the difference for me, so I wrote a post about it. Check it out and think about trying some of the things there.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[cookiebaker]

and just going to add.. trying the things in that post is a worthwhile endeavor, even if you are on medications..
every little thing we can do to improve functionality is worth doing