Oh Doctor Doctor You Know What It Is!

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JudyBluEyes

Member
Joined
Apr 23, 2017
Messages
13
Reason
Undiagnosed
Diagnosis
00/0000
Country
USA
State
California
Hello fellow sufferers. So glad to find this forum! So, some background to start. I'm a 61 year-old woman who has suffered from pain for a long time, some for a reason (degenerated discs in my lower back and neck) and some unexplained. But it's always there, sometimes quiet, sometimes screaming, but always there. I'd heard of fibromyalgia, but never knew what it was until about five years ago when I complained to my doc about constant pain especially in my lower back but also moving all over, and she said it was possibly fibro. Didn't think much at the time. She gave me Gabapentin, but it was for the pains shooting down my legs because of the discs in my back (I remember it worked well for that), I got the shot and it "fixed" that problem (not completely, but at least it's not debilitating any more). I quit taking the Gabapentin and mostly just used Ibuprofen for pain, and it worked ok, made it bearable usually and I just powered through. I did that until my sister started in on me about how Nsaids are bad for you and I shouldn't be taking so much of it. So I decided to wean myself off of them. That's when I really noticed how much pain I was really in. And it would move from one place to another, my lower back, my upper back, my chest (did you know there are joints in your chest?). A knee would start hurting, you would think it would be all swollen up but nope, no swelling just pain, my thighs, my hips, you name it it's hurt. I kept making excuses for each pain that attacked me. I shouldn't have been pulling weeds yesterday now my back is killing me, I twisted my ankle but I don't remember how or when, but I must have because it feels like I sprained it. Well, now I'm tired of making up excuses and started paying attention. It's not because I'm getting old that I wake up feeling exhausted and stiff, or can't remember where I parked the car half an hour ago! I just have a feeling something is not right with me. Twenty years ago I had severe Grave's disease. I had the same feeling. So I went to see my doc and talked to her about fibro. She agreed it is a real disease, but that a lot of doctors tend to use it as an umbrella and shove patients under it. She said that "most people who are diagnosed with fibro don't actually have it"!! She did have me do blood work and ruled out Rheumatoid Arthritis and Lymes and Gout. I got the results a couple of weeks ago, but have not heard from the doc. so I decided to write down all my symptoms and start keeping a pain diary. I have emailed her and asked for a referral to a rheumetologist. Anyway, thanks for letting me vent.
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
Welcome to the forum!

The journey of diagnosis is for most of us is a very long and frustrating one. The first time I was diagnosed, I refused it all together, though all the symptoms fit the diagnosis. But I had this feeling that the doctor came to the conclusion way too fast. Then a year later, after 2 neck surgeries, I decided to go for the whole process again, in fact 3 times with 3 different doctors and yes, they all agreed, it was fibromyalgia.

In a sense I was happy, I could now work towards getting the proper help. But on the other hand....well, once again it seemed that doctors were telling everyone with any pain that they had fibromyalgia. At work, right before I had to quit, one colleague was also diagnosed. But we were both so different - there I was unable to even get out of bed, get dressed, had to travel into work in a taxi, looking miserable, feeling ugly, making mistakes at work, hard time concentrating, using strong meds to control the pain, spending all off days/annual leave in bed resting. And there she was - small kids, weekend activities, driving a car, going on far away adventure holidays, looking immaculate with high heels, make up etc. Not that I can say anything about her complaints, but I could tell people were comparing us and probably thinking that I was 'exaggerating' - which is so so so unfair.


You took the right step by coming here to this forum. For me, this forum helps a lot! Sharing stories, hearing other people's frustrations, doctor/diagnosis stories, questions about the weirdest pain points etc. It makes me feel less alone in my suffering !

So post anytime about anything really. We are all here for each other!
 

JudyBluEyes

Member
Joined
Apr 23, 2017
Messages
13
Reason
Undiagnosed
Diagnosis
00/0000
Country
USA
State
California
Thanks for the response Vicky. I finally heard from my doc, she says I probably have fibro and osteoarthritis, she has referred me to a rheumatologist, now I'm waiting to hear from them. So on to the next step I guess. The weird thing is I will have periods of less pain, and then think I'm crazy for thinking it could be fibro, but then I wake up one morning and I can't hardly get out of bed I hurt so badly and I'm so stiff, but I have to get up and walk around because It hurts to stay in bed. I've been reading around here and it seems the one thing in common is the symptoms seem so different for everybody! But they all involve some unexplained pain. I'm so glad I found this forum, it's good to know there are others going through the same things.
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
The weird thing is I will have periods of less pain, and then think I'm crazy for thinking it could be fibro, but then I wake up one morning and I can't hardly get out of bed I hurt so badly and I'm so stiff, but I have to get up and walk around because It hurts to stay in bed.
This is perfectly describes my life as well. Some hours of the day, I feel pretty good - mentally and physically and moments like those I am also like 'do I really have fibro/depression/anxiety?'. But just as I am really doubting myself and questioning why/how, the pain starts to roll over my body, the dark clouds appear in my mind....and I am reminded of the fact that yes, I am indeed sick. This happens every other day, it is so weird. :?

I hope your next doctor's appointment goes well. Good communication is so important. But most importantly, taking real good care of yourself is a must.
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,377
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome to the family.its as Vicky say it's a long hard road,some days I can walk as soon as I wake up.some days I can hardly stand.i suffer from stiffness,it's the one thing I get more the anything ,shoulder pain back pain leg pain,and headache,.always stiffness it never leaves me.
 
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