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Booklover

New member
Joined
Aug 2, 2014
Messages
8
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DX FIBRO
Diagnosis
07/2014
Country
US
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OR
Last week a rheumatologist diagnosed me with fibromyalgia/chronic pain.

I should share that I was diagnosed as hypothyroid 4 years ago. And I'm overweight. I've blamed many of my problems on my weight, even as my dosage for my hypothyroidism has increased.

Over the last two + years, many symptoms have gotten worse, even with my hypo meds. Last April, I had a two week period that had me in frequent tears, so I made an appointment with my primary care doctor. She promptly said it sounded like my thyroid. Even though she felt my blood work didn't show my thyroid as being too off, she increased my dosage again. It helped a little, no more scary periods like that two weeks, but in June when I was supposed to get more blood work I pushed her (had to really push) and she ran additional blood work. Which led her to grudgingly refer me to the rheumatologist.

The rheumatologist looked at the blood results and the questionnaire he'd had me fill out and ruled out arthritis and a number of other things. He said my blood work shows everything as normal. When I made a comment about everything being in my head because my other doctor thinks a multivitamin is all I need, he said no. He then proceeded to tell me that doctors are relying so much on things like blood work that they aren't really listening to how their patients feel. He questioned me about my responses on the questionnaire regarding sleep, fatigue, bowel problems, headaches, pain, how fatigue affects my life (all symptoms not really being relieved by my hypo meds). He then had me get on the table and asked me if he was tender where he was applying pressure. Not tender. Painful. He did this in several places all over my body.

While I'm relieved to hear things aren't in my mind and what I've been experiencing for years now isn't normal, I'm a little in denial. I've spent many years blaming everything on weight. Or chastising myself for being lazy. And, honestly, I read others' experiences and my pain levels aren't close to what many of you experience. After my last dosage increase for my hypothyroidism, I know that my fogginess is linked to being hypo...or, at least, that medication is helping with the fibro. My hypo meds take a little edge off the fatigue, but not as much as I need.

He placed me on a low-level antidepressant for it's effect on seratonin levels, explaining that research has shown some patients experience some relief from the fatigue and experience better sleep (so I don't wake up fatigued before the day starts). He said that the advertised meds are not helpful for everyone and he prefers to start with milder meds if they'll work. Which I'm happy to hear. My pain levels are manageable, and he suspects that some lifestyle changes would help me manage what I do experience. He understands that fatigue is different than just being tired, so he encouraged me to start slow with the exercise and build up gradually. He gave me reading material that he's compiled from research and encouraged me to experiment with diet to help the IBS. He also encouraged me to read up on chronic pain and email him if I have any questions before my next appointment in a month.

I'm a teacher and a little scared about September. May/June were really hard months for me (really sore at night, fatigued, and then I'd crash on the weekends). Even last week I had a bad day for me (not sure why).

I'm also wondering...in your experience, do symptoms worsen over time, or does that really depend upon the patient? To me, it feels like I've been feeling worse as time goes on, which is kind of scary.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
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PA
Don't kick yourself for being in denial, I think it is a common faze of having fibro. I kept thinking they had to be wrong, because I wanted a disease that could be cured with a pill or at least one that others would know by name, thus proving I was really sick. I was told to just work harder and the symptoms would go away. So I worked myself to death and ended up unable to work at all. And so i learned to pace myself and do a bit of this and that and try to regain a bit of my former glory. It is hard to admit to ourselves when those around us think it is just laziness or faking. It is hard to accept the diagnosis and keep depression at bay. We do understand and hope that your coming to the forum gives you the knowledge and skills needed to make coping easier and acceptance easier in the long run.

In the mean time a big welcome to you, and please make yourself at home in posting questions or offering support or advice to others. Look forward to reading your posts and seeing your name around the forum. :)
 

Booklover

New member
Joined
Aug 2, 2014
Messages
8
Reason
DX FIBRO
Diagnosis
07/2014
Country
US
State
OR
Thank you! Knowing others have similar reaction when first diagnosed is helpful.

We just got back from a vacation visiting friends in Michigan. I really paid attention to my body and started to learn what will cause my symptoms to flair. The medication my doctor prescribed is helping a little, and I'm starting to figure out lifestyle changes that help me feel better.
 

Seph

Member
Joined
Aug 20, 2014
Messages
17
Reason
DX FIBRO
Diagnosis
11/2013
Country
US
State
Ar
Being diagnosed with a chronic illness takes some time to process. It can sometimes be like the grieving process, where denial is a part of that process.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi there! So sorry to hear you are going thru this. To be honest not much is known about this disease, but from what I have heard and experienced myself... Some people do seem to get worse after a while. Take me as an example, as a teen I was ok most of the time, pain here and there from time to time, but now flares are more often and different parts of my body are affected. But don't take my word for it, some people seem to stall and their condition - not really improving- doesn't really get worse.

Btw, I was in denial for years, even tho my symptoms weren't that bad. Feeling this way is normal.
 

Eff fibro

Active member
Joined
Oct 13, 2014
Messages
38
Reason
Undiagnosed
Diagnosis
10/2014
Country
US
State
MA
Thank you for your post. I was diagnosed with fibro a month ago and have slowly been accepting this diagnosis. It started 3 months ago with sharp shooting pains that would happen anywhere at any given point, completely unprovoked. First my arm, then a few shots in my hip, then radiating shots of pain through my chest, then nothing for half an hour, then my fingers and toes went numb. Nothing about my symptoms makes sense. Kinda supports the fibro diagnosis. At first I thought it was MS or lyme disease but numerous blood tests (I'm a nurse & did my research and made sure all appropriate tests were run) all came back normal as well as MRI and EMG. I saw my PCP who referred me to a neurologist, and he ended up making me feel like a hypochondriac. But the neuro then referred me to a rheumatologist who was sweet and gentle and asked all the right questions... I don't have "classic" symptoms of fibro but my pains and numbness come and go so sporadically, nothing else would explain that. Today I took another step towards accepting what I feel may be fibro. When I asked if I should expect symptoms to progress, my rheumatologist said its more likely they will change over time. And today I felt something new- my left thigh feels super tender, bruised to touch, feels like an ice pack on bare skin. When I rub it, the sensation changes to a warm tingly kind of feeling. I talked to a friend with fibro and she said "yep, that's fibro"... and again I found myself feeling trapped inside my own little world, comprised of pains and peculiar sensations, depressing. Again, consistent with fibro.
I keep going back and forth on if I experience the fibro fog. I feel foggy almost all the time, but I blame most of that on smoking medicinal marijuana. Lately, though, some days I feel foggy regardless of not smoking. I used to wake up after 8-10 hours of sleep, now if I don't set an alarm, I'll sleep into the afternoon. If I don't have anything to make myself wake up for, trying to coax myself out of bed in the morning can be a challenge. Again, suggestive of fibro. So I, too, am coming down from the denial train. Slowly. You are not alone. That's what I keep telling myself... I'm not alone. It's not in my head.
 

Marly

New member
Joined
Oct 12, 2014
Messages
6
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
de
I too am in denial. Its been 4 years since my diagnosis. No treatment is working for me. I do exercise regularly and that helps with my energy level but not the pain. lol. I exercise like normal people and feel in so much more pain. Why do I do to myself. Im glad that you are finding what works for you. It is a tedious process. Hopefully you will keep us updated on what works for you. At this point, I will take any advice that I can get. The doctors just seem to want to give you a pill.
 

Kerrie 2

New member
Joined
Dec 15, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
12/2014
Country
AU
State
nsw
Thanks so much for this post. I have also recently been diagnosed and I still don't know how I feel about it. Although it's good to have a diagnosis, I think I would feel better if it could be diagnosed by some sort of blood test or xray of some sort. That way it's there in black and white and no doubt (in my mind anyway). Even though the symptoms are there, I still find it hard to accept without some sort of test. I have read that everyone is different in regards to if it gets worse or not.
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
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Hertfordshire
Some ppl get worse yes .spme ppl stay the same. With old age everything get harder . But that don't mean your pain will. Some ppl are bed ridden . Some ppl are not. I'm a great believer in moving .for me to sit still all day I'd stiffen up like a pole.so u see there's no way of knowing what your be like next week let alone next year.
Just no your not alone and everything your asking yourself is normal xx
 

Lyndsey

Active member
Joined
Dec 18, 2014
Messages
89
Reason
DX FIBRO
Diagnosis
04/2014
Country
CA
State
British Columbia
Hi everyone, seems like denial is normal based on what I have read in the posts. I was diagnosed recently too and have tried so many different drugs I cant believe that nothing helps. Now the doctor has prescribed me percocet for pain management which seems to help a little bit, but once it wears off I am back to the same pain.

I find it so hard to accept given that there is no blood test to confirm the diagnoses. Makes me feel confused. Does anyone else feel frustrated when people say to you that you "look fine". I find it very frustrating when I am in constant pain or fatigue on a daily basis.
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
Why should there be shame about fibro? If we have a cast on well then others will see, and then beleave. I've been diagnosed since March of 2014, and personally, sick to death of worrying about what others "think".
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Moe1959, I think because you can't see it and some ppl use our illness when it suits, that a lot of us feel we're judged the minute the words leave our lips.
I don't have a prob saying what I have i. Very forward. Never used to be but life's a hard teacher .but I do understand why some people just don't like to tell ppl.
 
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