Help Please!

kary1019

New member
Joined
May 25, 2020
Messages
2
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
CA
Hi All!

I have been struggling with my health for quite some time now and recently came across fibro as a possibility. I have Crohn's Disease (diagnosed October of 2018) and originally I thought all of my symptoms were connected to that. However, even though my Crohn's is under control, I am still having a ton of chronic pain.

The worst pain occurs in my back (between my shoulder blades) and ribcage and feels different than a typical "overuse" type pain as my doctors have previously suggested. It's difficult to describe, but it almost feels like a stabbing pain combined with a dull ache? I also have a lot of pain in my knees, elbows, shoulders, and lower legs. It doesn't all feel muscular but it also doesn't feel purely like a joint issue Initially, it started as tingling in my legs that we diagnosed as restless leg syndrome, but then the pain started spreading throughout my. whole body. Sometimes it is only one one side, sometimes it occurs on both.

I also have a terrible time sleeping (frequently waking up at night) and never feel refreshed in the morning, even after 10+ hours of sleep. I sometimes have randoms skin burning or feelings of swelling, but with no swelling being present, and have suffered from anxiety and depression in addition to all this. I do frequent bloodwork that all comes back normal and I even conducted a nerve test that came back normal as well.

A quick Google of my symptoms suggested fibro, but I wanted to get some input from the lovely people here who have experienced it! Do these symptoms fit the bill? (also, I know it's impossible to tell without an official diagnosis and I plan on bringing it up to my rheumatologist at my next appointment :))
 

Doctrinaut

Member
Joined
Dec 28, 2019
Messages
16
Reason
DX FIBRO
Diagnosis
02/1995
Country
US
State
IL
Sounds very familiar to me. I've had fibro for about 20 years with some years of remission, but lately I have what yoiu're experiencing with the shoulders, arms, between the shoulder blade pain and sometimes like nerve pain around rib cage and sharp pain under shoulder blade on the right side which is intermittant and stabs through the front. The arm and shoulder pain feels muscular and also like bone/joint pain. Mine pain started on only my left side for years and now affects both. I also have insomnia. Not sure how much you are able to physically do but I feel the best after I moderately work out or run. Not sure if it's due to better blood flow but it works for me. Doesn't get rid of it but makes it much more manageable. Can't tell you that's what you have but it sounds familiar. I also have had extensive blood tests to rule out everything else with the rhuematoligist. Hang in there and let me know what your doctor says if you wish to share. :)
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
142
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
That sure sounds alot like what I experience as well. Plus I have alot of other symptoms. Sounds like you have had many other things ruled out. Definitely ask about it at your next appt. :)
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
554
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Sounds familiar to me. You could have fibro.
 

CalgaryChris3

New member
Joined
May 28, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
09/2004
Country
CA
State
AB
Hello Kary1019,
I wanted to send you a quick thought about getting your diagnosis of fibromyalgia, which sounds like you may have, to make sure your rheumatologist does the 18 trigger point test. I also found out from my rheumatologist that there is different levels of Fibro. I have the most severe type and have had it for many years. I know how frustrating and painful this disease can be so if you have any questions or just need to vent please send me a message and I will do my best to help! 🤗. In the meantime, rest when you can, laugh when something is funny, and be grateful for all the pretty things we see in our travels!🌹🌺🌸🌼
 

kary1019

New member
Joined
May 25, 2020
Messages
2
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
CA
Thank you so much for your kind words and suggestions, it made my day! I'm hoping to be able to actually got see my rheumatologist in person as soon as some of the corona restrictions let up, so when I do I will definitely make sure she does that test :)
 

Fatima

Member
Joined
May 31, 2020
Messages
21
Reason
DX FIBRO
Diagnosis
10/2019
Country
CA
State
ON
It does sound like fibro pains. The worst thing about a fibro diagnosis it that it is a ruling out of other illnesses as opposed to finding the illness. I am still learning how to manage my illness but I do find that movement is the best medicine. My new motto is upright and mobile although I cannot always do it.
 

Ahoppy73

New member
Joined
Jan 2, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
03/2018
Country
UK
Hi definately sounds familiar to me , the problem with the diagnosis is like has been said , it’s a process of ellimination and although iv’e suffered for five yrs now i was only dignised 2 yrs ago so that process took 3 yrs ... also there are a lot of symptoms attatched to fibro , all the ones you’ve mentioned plus many more 😞 .Definately mention it to proffedionals around you as it took me to look up my symptoms and mention it to them before it was considered which i found disturbing as these people are the ‘Proffesionals’ and they are supposed to tell you what you have !!! Too many people suffer for too long .. sorry little vent .... be persistent , pain killers don’t work for me , iv’e tried em all .. keep moving despite the pain , sitting there moping about, it makes it worse , keep smiling despite the pain , endorphins are bodies natural pain killer but to release them you’ve gotta be happy ! It’s backwards but works for me ....
 

Ash_Cav

New member
Joined
May 27, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
05/2020
Country
US
State
VA
I think because Fibromyalgia can manifest in so many different ways it’s hard to really tell. Based of your symptoms alone I can’t really relate but that doesn’t mean you don’t have it. My first symptoms were actually severe pain in the entire neck/shoulder/upper back region and a nearly constant need to pee, sleep issues and brain fog.. I just came home from deployment (Navy) and they did all types of Imagining for my neck but found nothing, sent on my way with muscle relaxers and ibuprofen. This pain came and went as did my sleep issues but the need to pee and brain fog was constant. Fast forward 2 years (still in the Navy) and I still have all those symptoms but now I have pain in my knees, and hips/butt, and a burning pain in my hands and wrists. Not to mention most days I feel like I have the flu I’m in so much pain and the fatigue is unreal. Went to see a navy rheumatologist because they thought I may have RA or AS and they did a full work up of blood and Imagining and an hour long conversation/exam. At the end of it all she said I have Fibromyalgia and I didn’t even know what that was... this was last month. So it can present itself differently in everyone.. definitely get a full work up to rule out everything and be thorough with every odd symptom you can think of.
 

Geeena

New member
Joined
Mar 8, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
02/2020
Country
UK
so many things are similar to my own before diagnosis.. so yes bringing this up is a good idea imo.. Saying that, rheumatologists I think try and rule out everything else before giving fibromyalgia asa diagnosis. This is just my experience. Im wishing you all the best with your situation and hope you find some pain relief that works with you 🌸
 

Nancolorado

New member
Joined
Jan 27, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
CO
First, let me tell you how very sorry I am that you too are dealing with what most of us here live with. Your symptoms certainly sound like fibro. Talk with folks in your area to find a physician who can properly diagnose you. Fibro mimics many things and a proper diagnosis is important.
I was diagnosed 25 years ago. My presenting symptoms were generalized muscle and joint pain, skin issues - eruptions, rashes, sores and sensitivities to soaps, perfumes, deodorants, powders and the like. I also experienced difficulty sleeping. Over the years symptoms have waxed and waned save for the pain and the sleep issues. Over the years, I've had both hips replaced due to femoral head collapse - reason? Who knows? I've had heart issues - those wax and wane - for a long time it was congestive heart failure but I had an echocardiogram last week and there was no evidence of heart disease nor of congestive heart failure though the swelling in my ankles remains. There will be a lot of unanswered questions for the reasons for your symptoms. It's just part and parcel of fibro.
Again, I am so sorry for you and hope you find some relief. Just having a diagnosis will bring some relief. Good luck.
 
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