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Feien

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Joined
Apr 4, 2016
Messages
11
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DX FIBRO
Diagnosis
04/2016
Country
CA
State
Qc
Hello everyone,

I'm a 24 year old female from Canada. I've been experiencing pain and fatigue for some time and I've started wondering if I might have fibro...

I have been diagnosed with hip bursitis about a year ago. I've been having chronic hip pain for years, anti-inflammatories don't help and neither has physiotherapy, despite bursitis being a self-limiting condition... My doctor has referred me to a sports medicine doctor who might try cortisone injections soon to see if that helps. So hip pain has just always been present, and there is a burning sensation when I touch my hips, all the way down my thighs to my knees.
However, I've been having pain in other parts of my body as well. Knees, thighs, shoulders, back, neck and head I would say are the most often painful. It comes and goes, some days I just wake up and my arms hurt or I have a hard time walking because my whole legs hurt. Sometimes movements hurt, other times it hurts even when I'm just resting and not moving.
I'm also constantly exhausted, though I associated that to my mental illness (BPD, depression and anxiety) and side effects of my meds. I take meds to sleep now but even with those I just feel like I don't rest at all. No matter how long or how often I sleep, I wake up and I am just as tired.
I recently had a lot of blood tests done because I've been having chronic GI issues (nausea, vomiting, diarrhea) for a long time and all the test results came back normal. I assumed those GI symptoms were just from my anxiety, although they don't really correlate with my stress levels so I don't know...

Not long ago, a friend of mine read about fibro and told me about it because she thought it sounded like the symptoms I've been having. And now I'm wondering, I guess it does sound familiar but at the same time, I don't know if the pain I've been experiencing is what fibro pain is like... I don't know how much pain is "normal". Aside from the hips pain, I just thought the rest of my body was just hurting from being stressed or sore. I just figured it was normal, and now I'm not so sure. Is there any way to know?

I'm afraid I'm just overreacting and being a hypochondriac. I mean in the end, it doesn't really change anything and all I can do is try to manage the pain but it would be reassuring to know there's a name for it, you know? Just, knowing there's a reason why I'm always so tired and in pain, knowing it's not just me being lazy or weak... knowing I'm not just imagining it.
I hope this makes sense.
 

oportosanto

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Joined
Mar 16, 2016
Messages
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Reason
Relative
Diagnosis
05/2015
Country
US
State
FL
I think that the level of being tired and fatigue is what determines if it will be fibro or not, if we can live a more or less normal life we are fine.
 

Feien

Member
Joined
Apr 4, 2016
Messages
11
Reason
DX FIBRO
Diagnosis
04/2016
Country
CA
State
Qc
Yeah, that makes sense.
I constantly feel exhausted and worn out. Some days are worse than others. Some days it takes everything for me to go to the grocery store or clean up or just wash myself. It's very frustrating...
I go to work, I manage to do that. But on work days that is often all I can do. I don't have spoons left after work to do anything else. So it's been very hard for me to keep up with chores, getting things from the store, etc. Even going to the pharmacy for my meds.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Welcome...it does sound like fibro especially as you are having difficulty with going to the store and doing chores.

Have you thought that your hip problem might not be bursitis as its not responding to treatment but might have been the beginning of fibromyalgia that has now spread .

Mine started just in one foot and one knee and then spread body wide a bit like you describe .

I had been told i had chondroma patella in my knee and was sent for physio that just made it worse...it turned out to be fibro and the physio was too vigorous for my now exercise intolerant muscles that just seized up.

Pain isn't normal we kid ourselves at first and make excuses...it's a very common reaction.

Fibro pain knows no bounds and comes in many forms ...burning...stabbing..throbbing...aching and digestion problems nausea etc are all common too.

Pain moves around randomly...changes hour by hour or day by day or can stick around in some parts of you permanently to varying degrees depending on activity, sleep and other factors like weather and stress.

Maybe find a good doctor whi knows and believes in fibro and discuss your concerns. Ask for a referral to a rheumatologist who should be able to assess you properly.

Good Luck.
 

rz3300

Member
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Mar 24, 2016
Messages
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Other
Diagnosis
00/0000
Country
US
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NE
When it comes to matters of health I would always side on the not being a hypochondriac and just being concerned, meaning that you should go get checked out. You can never be too safe, and I have seen a lot of cases where if it were caught earlier there could have been things done to help. It is better safe than sorry, and so you should always be aware of your symptoms. Best of luck to you and stay strong.
 

Feien

Member
Joined
Apr 4, 2016
Messages
11
Reason
DX FIBRO
Diagnosis
04/2016
Country
CA
State
Qc
Thank you!

I do wonder now if the hip pain is really just bursitis... I had doubts when I started having pain in the knees, but when I asked a doctor they told me I might have tendonitis or something like that in the knees as a result of my altered standing position/walking due to hip pain, which makes sense. But the pain has definitely spread to other parts of my body.
I'm so used to just telling people my hips hurt, but really, it's the whole legs from the waist down, and often the back and shoulders as well.

I was talking with a friend today and he made me realize that some of the pain I thought was normal actually isn't... Like when I touch my body, especially on the arms and legs, if I press even just a little bit, it hurts and leaves a burning sensation that lingers for a while... I never questioned that, I thought everyone experienced that? It's weird.

I'm not sure how to bring it up with my doctor. I'm so afraid of sounding like I'm making it all up, especially since I've never told her about how the pain has spread now. :( I have really bad anxiety, especially in situations like this where I'm afraid the person isn't going to believe me... I'm really scared of bringing it up.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Maybe check with the practice manager if your doctor is familiar with treating fibromyalgia or is there another doctor with more experience. You might feel less anxious if you know in advance her stance on fibro.

I understand you being afraid of not being believed. It is something almost all of us experience. The more you tell me the more similarities with how my fibro evolved and was misdiagnosed for the first year or two.

I too had shoulder pain and was told i had a frozen shoulder...i thought my knee and left leg was hurting because i had been putting more weight through it and changed the way i was walking having broken my right foot and in plaster for weeks.

I had ultra sounds and MRI's and all was normal yet i was in pain.

You could find info on the web ( there is lots, just type in symptoms of fibromyalgia) and you will find fibro support sites and medical sites full of facts.

You could pick one that concisely describes your pains fatigue etc and how you are suffering and print it off to take with you and give to the doctor. .... while explaining your concerns and symptoms.

Or you could post it too her in advance along with letter containing a list of all your symptoms explaining that you are very anxious about not being believed .

This will give her time to digest it all in advance of a face to face appointment.

That would get all the explaining out of the way before you have your consultation and hopefully reduce your anxiety and the pressure of where to start.

Depending how the appointment goes as I mentioned above ask for a referral to some one senior with a fresh pair of eyes who can examine and talk to you.

A good rheumatologist will definitely believe and understand fibromyalgia.

Good luck let us know.
 
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oportosanto

Distinguished member
Joined
Mar 16, 2016
Messages
166
Reason
Relative
Diagnosis
05/2015
Country
US
State
FL
That is one good tip, we should always ask for a second advice and to people we know, many times a good diagnose can make all the difference.
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
Hi Feien, welcome :)
The symptoms you are describing do sound very familiar. When my fibromyalgia symptoms are worse, I become very anxious. The anxiety is more unbearable than the pain sometimes.

I think what you have already posted to this forum is a really good summary of your symptoms. And why you hesitated to bring it up.

It might help your anxiety to make a plan for what you will do if your doctor does say something like it's all in your head or it is "just" depression. It could be as simple as saying "That isn't helpful." or "I can see you are not the right person to help me with this." or "Nevertheless I am in pain and I need help for that."

When I know I have a tough conversation coming up, I've gone so far as to write some key phrases down in case I am too upset to remember them

And remember you just might have a great doctor who can really help you. If not, it's on your doctor not you
 
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diamond

Legendary member
Joined
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Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
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UK
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Great tip DK.
 

oportosanto

Distinguished member
Joined
Mar 16, 2016
Messages
166
Reason
Relative
Diagnosis
05/2015
Country
US
State
FL
Yeah, that makes sense.
I constantly feel exhausted and worn out. Some days are worse than others. Some days it takes everything for me to go to the grocery store or clean up or just wash myself. It's very frustrating...
I go to work, I manage to do that. But on work days that is often all I can do. I don't have spoons left after work to do anything else. So it's been very hard for me to keep up with chores, getting things from the store, etc. Even going to the pharmacy for my meds.

That seems to be a little too much. I mean, have you gone to the doctor and asked a professional opinion on why you are feeling like that?
 

Feien

Member
Joined
Apr 4, 2016
Messages
11
Reason
DX FIBRO
Diagnosis
04/2016
Country
CA
State
Qc
That seems to be a little too much. I mean, have you gone to the doctor and asked a professional opinion on why you are feeling like that?

Oh, yeah. I have depression, GAD and BPD, so that's what they think the constant fatigue/not getting out of my home is caused by. I also take meds and some of them cause drowsiness, so that doesn't help.
We recently did a bunch of blood tests, all came back normal. I have chronic nausea and GI issues, which we also have no explanations for. I was just put on a strong antacid to see if it would help, but no luck so far.
I'm scheduled for ultrasounds but the hospital doesn't have any availability until July so it'll be a while before I get results from that.
And now I'm waiting to hear from the sports medicine clinic to see the doctor who will try cortisone injections for my hips.
I guess fibro could help explain both the fatigue (or part of it) and the GI issues. I have an appointment with my doctor at the end of the month, so I guess I'll try to bring up my concerns then.

Writing down key phrases is a good idea, thank you!
 

laalaa

New member
Joined
Jun 12, 2016
Messages
6
Reason
Undiagnosed
Diagnosis
06/2016
Country
AU
State
Nsw
I am having currently hip pain that you are describing in my left hip. I have scans and xrays and it all comes back normal :(
I have had this hip pain for over a year myself and no one can give me a diagnosis for it. It has now spread to other parts of my body. Sometimes its completely down one side of my body other times both sides. I hope you get some relief soon. Being constantly tired is frustrating too.
 
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