Diagnosed, but still doubting. Am I just grasping for an answer?

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KBburg

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Sep 15, 2017
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Undiagnosed
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09/2017
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US
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Hi everyone. So my doctor diagnosed me this week with fibromyalgia. It's been over six months that we've been trying to figure out what is going on with me. Fibromyalgia is very new to me and I'm very unfamiliar with it besides the research I've been doing on it this week since the diagnosis. The one thing I'm getting the feeling of this is very hard to actually diagnose, since there's not an actual test where you can test positive etc. I'm reading people's descriptions it seems to resonate with me for the most part, however I do not consistently have that pain all over where someone touches me and it hurts.

So I'm hoping a few of you will take time you read my incredibly long post (sorry, I just wanted to be thorough) and tell me if what I have does sound like fibromyalgia, or maybe the beginning of fibromyalgia since I cannot identify with always having the touch pain. Although I've had to flare ups, where I get what they mean by that.

I went off the Depo shot summer of 2016, I had been on it for a year. I also stopped breast-feeding around the same time. Besides that I have had no diet or lifestyle changes. Everything seem to have started when I had what I guess would be my first flareup in February. I was absolutely miserable and felt like I had the flu or some food poisoning. I was nauseous but never got sick. Probably just crazy from all the pain I was in. I could barely move or do anything and I have no desire to eat. I was also extremely exhausted. This lasted very severely for two or three days, and for at least a week afterwards I was still not feeling good at all. I had another flareup like that in late April, that one only lasted a day. Between February and April I constantly struggled with anxiety, fatigue, stomach issues, and random pains. At the end of April I decided to see if it was gluten and went gluten-free for two months. The anxiety and stomach issue stopped, however my fatigue and the random pain never went away. I have not had a flareup since then even though I started eating gluten from time to time back in July.

My current symptoms are definitely fatigue, some days worse than others (barely can force my self to get out of bed, etc on the bad days) but overall from where I was a year ago I definitely have had to cut back on my activities and feel exhausted from doing the same activities I was doing a year ago. Most days I am getting about 8 hours of sleep but still feel a strong need to nap by noon. Even if I do (I work from home), I am tired again by 5-6 and wanting to be in bed by 9.

I also I'm still struggling some with anxiety, although anxiety attacks are much fewer and farther between. I have been actively working on controlling this though.

As far as the pain side of things, my back (shoulders all the way to curve) almost always hurts. My calf muscles seem sore more often than not, and I seem to have carpal tunnel syndrome, where my forearms, wrists, and elbows are constantly sore or at least a tired achy. I also get things I call ice pick headaches in the side of my head or behind my eyes a lot. I also get strong soreness and Aches in the back of my neck. I've had to stop wearing bras with underwire because that would get sore in just an hour of wearing a normal bra. I actual prefer to wear no bra at all at home because sometimes even the tightness of a sports bra makes that area sore. The other pains I get are like muscle spasms that can go anywhere from strong tight pulling feeling that just makes me feel like I need to shake out or stretch whatever area of my body it's happening to, to a seizing pain that is very sharp and will make me stop in midsentence if I'm talking. These can last anywhere from a few seconds to a couple minutes and they can go away and come back. It seems to vary throughout the day but focus on certain areas for certain periods of time but it can hit anywhere on my body it seems. Also some days/weeks are worse than others as far as the random pains go. I would definitely say there's always some area of me that aches consistently through the day, typically my back and legs.

Oh another spot I consistently have random aches is below my collarbone at my chest. And my doctor has tested and my heart is fine and it's nothing like a heart problem. It also doesn't feel like its in my heart since it's more in the exact middle and a more surface pain.

So that is my story, hopefully you can shed some light if indeed my doctor is pointing me in the right direction or if I should see someone else for a second opinion. I definitely agree that it could be fibromyalgia. However, I am just not sure how often you are supposed to be in the serious touch pain stage versus seriously achey and sore on a daily basis to be considered someone who has fibromyalgia. I just don't want to miss something or go down a wrong path in finding out what all my random symptoms actually mean. Thank you all for your time and help.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
As far as you descriptions it sound to me like you've got it which I assume that your doctor have done his job perfectly. The expression of hurting when touch doesn't mean that on your random area like arms or where you your self normally touch, but mostly directing out from the fibro tender spots. I used to wonder that the same thing when my diagnosed came out with fibro. Till one day my bf landed his hand on the right side of my upper hip try to hold me. Omg I scream so lound I had to grab my mount shut cause I was so shocked I can't even wrapped my mind around on what in the heck that extreme pain sensation was till later on I quickly realized " ah so this is what they meant by hurt when touch" wow it was very shocking painful feeling it hard to described . Fibromyalgia is the illness that contain with lots of many crazy painful or irritating symptoms which goes by lots of medical names. Most of the common sensitive to touch in fibro fallen in categories of Allodynia , and Paresthesia ( you can try look them up online ) which holding a loads of crazy symptoms on their own too including what you are experiencing. Then the lists of many others goes on. However non of them will cause any physical life threatening harm, but mentally it can do quite a numbers on your lifestyle and mental mind. I actually don't even remember the last time I was capable of wearing a bra or a regular underwear most of the time none . My clothing hurt on my body I have to be careful with seams and tightness of the fit. So loose clothing or one size fit all had been my clothing for many years now. Quite breezy actually
 
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MrsB

New member
Joined
Sep 25, 2017
Messages
1
Reason
DX FIBRO
Diagnosis
03/2016
Country
CA
State
Canada
I was quite uncertain with my diagnosis when it came. In fact, I was in denial for about 1.5 years because I just didn't see how the diagnosis "fit" me. Looking back now, I wish I would have accepted it sooner. I kept pushing, I kept fighting, thinking if only I work harder, do more yoga, take more sleeping pills, drink more caffeine (do you see an unhealthy pattern here?) I was fighting the inevitable, and once I said OK FINE, I'LL TRY LYRICA, oh goodness I wish I had tried it sooner. I understand it doesn't work for everyone, no medication does, but it's given me a quality of life back that I hadn't known for years. I'd suppose I was wandering around with fibro for about 7 years now, just thinking I was tired and in pain because of workouts. Or that my memory sucked because I was aging (I'm only 30!) or that my anxiety was rampant because of life stressors. I don't think it's a one-size-fits-all diagnosis, as my sister experienced different symptoms than I did.
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
Don't worry, you are truly not alone in 'finding excuses and making all these abnormalities seem 'normal'' in your mind.
A little pain here and there, normal right? Must be. Exhaustion? of course, isn't everyone complaining about it. Foggy? Must be my age (like you, I was also in my late 20's and blamed fogginess on my 'aging problem!)

Acceptance can take a long time. And sometimes it is good to question whether the diagnosis is the right one. Often when I meet others, in real life, who also suffer from fibro, I have this feeling that what I am going through cannot be 'just fibro'. I've met so many outgoing, active women with fibro that it can get to you. I can barely get out of bed, there they are at 5am, jogging, then bringing their children to school and they go off to work. I have no children, no job. I only have my bed = my husband, my life, my career...and no matter how many hours I sleep, I feel exhausted. So yes, often I also hate my bed!

I'd trust this doctor and together, I'd work on an overall well-being plan. That includes medication, but also overall life changes, new way of doing things (aka pacing!), and finding support etc. Trust your instinct for now at least. Fibro makes sense, so it is fibro. And now that you have your diagnosis, you know what to search for online incl. this forum, talk to family members, friends etc. Good luck with it all!
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,536
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
LOL Tipnatee u make me literally laugh out loud.....Quite breezy actually!

This struck a chord with me...in my pjs and no bra....all loose and comfy....i got an image of the wind coming along up my loose pyjama legs up my top until i was inflated by the breeze!

KBburg...welcome ...thanks for sharing your story. It does sound like fibro...which comes in many forms depending on the individual.Wanting your bra off was a bit of a give away to me..i bet everyone with fibro either now wears a soft non wired bra or takes it off whenever they can!

I cut the straps off all of mine before i was even diagnosed!

like vicky says focus on pacing and resting and taking care of yourself. Find what you can and cant do..take it slow and gentle that way you have a better chance of keeping your symptoms more tolerable. Its not an easy road so support from whatever sources are invaluable.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
LOL Tipnatee u make me literally laugh out loud.....Quite breezy actually!

This struck a chord with me...in my pjs and no bra....all loose and comfy....i got an image of the wind coming along up my loose pyjama legs up my top until i was inflated by the breeze!
.
Now you making laugh from your laughing at my breeziness. I often wear lose pattern like maxi dress that resembling a parachute, I’m no longer worry about living in the high rise building, or drowning cause all I need to do is just flopping air under the wet fabric and it will float ( surviving technique)
 
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Alex

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Joined
Oct 19, 2017
Messages
13
Reason
DX FIBRO
Diagnosis
06/1999
Country
Us
State
Fl
I have had it so long that I've seen lots of people get diagnosed, and it seems we all go through this questioning phase. It is because there isn't a black and white diagnosis, like a number on a chart. Plus part of this is denial - who wants the disease anyway?

It does sound like you have fibromyalgia.

Re: the bra thing, gosh I recently bought some underwire bras (forgetting why I never wear them) and they hurt like crazy. LOL
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
Dear Alex

You'll be surprise how many ignorance people out there who think fibromyalgia is a luxurious life style , so much so they wish they have it but since they couldn't they despised all of the fibro sufferer instead.

I hate those bra wired before I even got the fibro. Not to mention the straps .. yike! It drove me insane. I prefer bra padding attaching inside my shirt or dresses instead.
 

Lubkos way

Distinguished member
Joined
Oct 3, 2017
Messages
123
Reason
DX FIBRO
Diagnosis
03/2002
Country
Can
State
Quebec
Well,I would have to agree with all the previous members,you have all the symptoms.Some of us were relieved to finally have a diagnosis,but to be honest,knowing does not guarantee that you will be able to manage all your symptoms.
It is a constant struggle,and the ones that are somewhat successful,are those who can read what their body's needs are and creating an environment that is conducive to getting good sleep and keeping stress levels low.The sooner you accept it and act accordingly and get support,the better your chances of managing it.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,536
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
So accurate Lubkos way.
 

lyrin

Active member
Joined
Oct 25, 2017
Messages
38
Reason
DX FIBRO
Diagnosis
10/2017
Country
US
State
OH
A note on pressure points: unless you have overall body pain to touching you probably won't hit these accidentally. I didn't think I'd pass a "tender points" test but on dear when my doctor pushed on them it was excruciating. I've actually tried to find them myself and I can't.

I agree with everyone else that it sounds like fibro.

And ooooh the fatigue. I have to get to bed by like 7 to get up at 5am. And weekends when I don't have anything I'll sleep like 16+ hours on weekends.

I do try to keep myself busy. Also, I don't know if this is common for fibro, I was diagnosed ADHD but my Concerta is a lifesaver. As long as my meds are in effect I'm usually all right. But I've heard of a few non stimulant medications that can help you stay awake (modafinil, for example).

The problem with them is still you have to get UP to take them so there is still that slow slide out of bed in the morning.

Sometimes I just HAVE to have a free weekend just to "catch up" on sleep by sleeping through almost all of it.

I hope you can find medications that help. Best of luck.
 
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