Is this Fibro? Any insight would be very helpful

[Spacecat]

Hi All
Thanks for reading my post, I am having a particularly bad day today and not sure what else to do.
I have on off suffered tired muscles in my arms for several years, it would come on quite rarely and wouldn’t last long but I would notice getting tired easily e.g drying my hair - they would ache as if the muscles were tired. I finally went to the gp early 2019 as at the time It was affecting my ability to decorate (hold my arm up for a while to paint) and felt i should just get it checked out. Since that time it has happened increasingly frequently and accompanied by new and increasing symptoms. They can last anywhere between a few days and a month and fluctuate in intensity.
Things seemed to peak in October 2020 i started to experience a horrible burning pain in the top of my back (between my shoulder blades) its a hard pain to explain - somewhere between back ache and acid reflux. Also started exerience tingling, stiffness and pain in my hands. My neck shoulders, and arms were most affected - feeling tired - like i have done a huge workout the previous day, but it doesn’t improve with rest.
Fast forward to the present day i am currently experiencing all of the above but to a greater extent. In addition my legs ache, my joints are sore and so stuff in the morning, pain and tingling in feet, ibs symptoms. Face pain sometimes and twitching muscles in my face, brain fog.
I have been seen by a muscular skeletal clinic which mentioned lots of scary things like ms but felt it wasn’t their remit and have referred me to rhumetology- i read in the clinic letter they suspected fibromyalgia.
I am still awaiting the appointment but have obviously googled fibromyalgia and some of it rings true, but i’m anxious about nit knowing and not knowing what might help if anything.
For context, i had a baby earlier this year, it is hard to know what it related to tiredness/ giving birth but i definitely had a lot of these symptoms beforehand and they got really bad in pregnancy. I can sort of funtion with the pain currently but I am very nervous how I will cope returning to work especially if i still don’t know what is going on. The whole thing is really affecting my mental health.
Any advice/ thoughts would be so helpful.

Tia

 

[cookiebaker]

Hi Spacecat. sorry to hear about all the aches and pains, and with a baby, too..

there is a free "test" you can take yourself on our parent home page - take a look here
if your score is high enough, it probably is fibromyalgia... but do keep your appointment regardless of what the results are.

Chances are you wont be given a diagnoses right away, they will probably want to run some tests... blood work at the very least.
I know it can be hard to not stress and worry about things (i am a HUGE worry wart) but do your best to put it aside and focus on you and your baby for now. Stress just causes more pain, as if we dont have enough already.

Because everyone is different, and has slightly different symptoms, there is no one thing that works for everyone.
Sunkacola has a great post with lots of suggestions & things to try here.

Hang in there, go to your appointment, and hopefully get some answers soon.

 

[Spacecat]

Thank you for your reply. I seem to meet criteria based on that test. I have had so many blood tests / nerve tests, xrays etc - everything ok so far. Only thing i haven’t had is an mri. Will see what the appointment says, trying no to put too much hope on it!

 

[cookiebaker]

yeah, i ran the gamut, too... EMGs, xrays, more blood work than i care to think about (was beginning to think i was a pin cushion, lol) and MRI for a couple of things as well.
the blood tests are used to rule out things like auto-immune disorders (RA, Lupus, etc) and other things.
the funny thing for me is i wasnt even actually told by a doctor I had FM, i saw it in my "conditions & diagnoses" page on my account with the clinic (online account that lets me see appts, test results and other stuff) I had kind of suspected for several years, so to finally have the actual diagnoses was kind of liberating.

 

[Spacecat]

That is really disappointing to hear you were not even told about a diagnosis glad you managed to find out and it felt helpful. I’m scared of a diagnosis but also sort of got to the place where i just want a label for whatever it is, can see how It could be liberating for sure. Hope you have found somethings that help, I struggle with the thought this might be for the rest of my life and on bad days feel very depressed about this. On better days I feel like I can still enjoy life at times

 

[cookiebaker]

well, i have a bad habit of looking at stuff before the docs actually reach out to me about different results...
like with a kidney stone recently.. the lab results from testing the stone were posted online a week before I got the phone call about it, LOL

i completely understand about being nervous & stressed out about things. but yeah... need to take a deep breath, let it out slowly, and tell yourself patience is a virtue. You will get this figured out. It might take a little time to sort out what is going to work best for you, but you can get there.

I am still working out what I need... most of the meds they wanted me to try ended up with undesirable side effects.. one made me completely exhausted all the time.. i would fall asleep at my desk and be out for a couple of hours (thankfully, not working right now) another gave me tremors... to the point i was having a hard time eating.
The one they would really like for me to try now is not covered by insurance, and with no income, i cant afford it, so....

Due to other issues in addition to the FM, I have applied for social security disability... still waiting on a determination for that (applied Nov 30, 2021) - would be fantastic if they would approve...

 

[sunkacola]

@Spacecat , welcome to the forum.
The most important thing you can do right now is not stress. Do whatever you have to do, or whatever works, not to think all the time or worry about what your problem might be, because that is the one thing that is 100% guaranteed to make it worse! Don't make things worse for yourself than they have to be. Relax, and wait to see what happens.

Second most important thing is to remember this: fibromyalgia is Not a death sentence. It is not likely to be progressive. You won't end up unable to do the things you love if you take proper care of yourself. There are many things you can do to take proper care of yourself and if you are diligent about doing what works for you, your current symptoms may be relieved at least in part. Many people with fibro lead full lives, and I am one. I manage that because I know how to manage the fibro and listen to my body. It is not hard to do!

So all this really means, if you do have fibromyalgia, is that you have the opportunity to experiment and learn about what makes things worse and what makes things better for your own body. No one else can tell you what those things are because everyone is different in this syndrome and no one thing works for everyone. You have the chance now to really learn to listen to what your body is telling you, and it is actually an exciting journey, sure to result in better times for you.

So come here for inspiration and support and ideas and don't stress yourself out about this. And let us know what, if anything, you find out.

 

[Spacecat]

Thank you, I really needed to hear this today. I think gooogling it has not helped, I either come
Across lots of people talking about how they have had to give up work / hobbies etc or start to convince myself that it is something more progressive going on. I have been getting pins and needles / burning sensations in hands and feet and now worried thats a v bad sign and that getting new symptoms means it is progressing. You are right though, somehow need to curb the worrying. I can do it sometimes but last few days it’s spiralled! So glad to hear you are doing okay despite everything

 

[sunkacola]

Stop Googling!!
I know it is the natural thing to do (at least, it is since the last 25 years or so) but it won't help you right now.

And be very serious about relaxation techniques or whatever you can do to stop the stressful worrying. Find something that helps and do it.

Fibromyalgia is manifested so differently in each person who has it that reading about what other people experience is not useful (other than getting sympathy and not feeling all alone) unless it leads you to start trying different things to find out what is helpful for you. Sympathy is good and not feeling alone is good but if that is all you get it won't help you feel better.
And do not read any more writings that talk about how awful it is or what people can no longer do.

I find that most people with fibro can do most of the things they really need or want or love to do IF they approach those things in the right way and take very good care of their health. You might not be able to run a marathon, in other words, but you could maybe run a 5k. You may not be able to do something all day long but that doesn't mean you can't get it done a little bit at a time. It is really all about learning and adjusting. Read my advice post and take heart. You will be OK.

 

[Carolyn Rhodes]

Yes! My symptoms were very similar to yours and still are. My GP diagnosed me in 2017...

 

[Shanti Shanti]

I agree!! After literally 2+ decades of being dismissed for unexplained pain, there was something so empowering about finally having something to research... and forums to join.