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Undaunted

New member
Joined
Feb 6, 2015
Messages
6
Reason
DX FIBRO
Diagnosis
04/2016
Country
US
State
OH
Hi all,

I have had chronic pain and severe fatigue for years and my doctors have failed to find the source. Because I am only 18, they do not seem to consider things such as fibromyalgia or the like and through each round of blood work they just tell me to eat right, exercise, get enough sleep, etc. I follow their instructions, but my symptoms persist and the more research I do, the more I wonder if I could have fibromyalgia.

The most prominent and constant symptom is the fatigue. I sleep for 9-10 hours every night but still slog through each day, usually having to nap. If I get 8 or less hours of sleep, or if I have been very busy, the exhaustion is so deep that I feel it even in my bones and organs. Every part of me struggles to function on those days. The worst days are the "collapsing days", when my body can't even manage to hold itself up and my legs give out on me when I try to stand or walk.

My pain comes in two different forms. The first, more or less continuous, is a dull, aching pain throughout my entire body, similar to the aches you get when you have the flu. Most days it is tolerable but sometimes it will become excruciating for 2 or 3 days with no apparent trigger. The other type of pain is an intense, sharp pain in one or more joint. Most commonly, this pain occurs in my elbows or knees. It is always at night, and the pain wakes me up. Upon waking, I am unable to move the painful joint for a minute or two, and then only with great difficulty. Sometimes this happens three or four times in a night, other times a week or two will pass without such an incident. Additionally, I often have painful muscle cramps and spasms, mainly in my limbs, that last for an hour or so.

Lastly, some miscellaneous symptoms which might or might not be related: back pain, brain-fog and trouble concentrating, migraines, very weak immune system (I am always mildly sick and on the verge of being sicker), abdominal pain and digestive problems, hair thinning, heart palpitations, and random tingling and numbness in my fingers and toes.

I appreciate any help you guys can give me! I am a full-time college student (pre-med) and I also look after my grandmother who just broke her hip, so now more than ever, I need to find ways to cope with and combat whatever it is that is happening in my body.

Thanks again,
Undaunted
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
I'm no Dr , but u sound a lot like me. Have you asked the Dr about fibro. Or found another Dr. Some Dr don't like to admit young ppl have this, they think maybe your grow out of it ,or your making it up. I'd try to find a new Dr if I was you.
I get stiff joints at night, it's not the joints but the muscles around them. With fibro they seem to think we don't get into deep sleep that way u can sleep all night and still feel tired out.try a hot bath or shower before bed .that seems to help me alittle xxx
 

terbaer

Senior member
Joined
Apr 3, 2014
Messages
430
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
WA
I agree with Forgetmenot. I would consider finding another doctor. Also, I'm curious about your sleep as well. I got a fitbit and found out that I was really only sleeping a couple hours per night, in a full night in bed "sleeping". You may be doing the same thing. I've gotten pretty good at estimating before I look because I toss and turn due mostly to pain.

I'm so sorry you are going through this at 18 years old. It's not fair. If you can find someone who deals with fibro, there may be some medications that help you. I think Rhumetologists (sp) seem to be the most knowledgeable about fibro. Do some web searches in your area. Look at their web pages and see if they list fibromyalgia as one of the things they specialize in. Good luck and gentle hugs....
 

Undaunted

New member
Joined
Feb 6, 2015
Messages
6
Reason
DX FIBRO
Diagnosis
04/2016
Country
US
State
OH
I dealt with insomnia a lot for the first few years, finding it very hard to get to sleep and often to stay asleep as well. Since school started in the fall and I got exponentially busier/more active, I am almost always asleep within ten minutes. Like I said, I sleep for almost ten hours, from 10 or 10:30pm to 7:30am, every night. Good points about the quality of sleep, though. Many nights I wake 3 or 4 times, just very briefly, but I'm sure that that means I'm not getting much deep REM sleep.

The only thing the doctor ever diagnosed was a vitamin D deficiency, which I hear is pretty common in people with fibro, but that was almost two years ago and since I'm now on a high dose of D3, my levels are well within the healthy range. I plan on seeing a doctor during spring break (no time while school is in session!) and specifically bringing up fibro and related disorders. Hopefully she is willing to look into it and doesn't think I'm a hypochondriac.
 

Ruralchick

Senior member
Joined
May 2, 2014
Messages
325
Reason
DX FIBRO
Diagnosis
09/2013
Country
US
State
AZ
Have you had your thyroid checked? The hair loss with some other symptoms make we wonder about that. Have you had a "trigger point" test? You know your body better than a Dr., so I hope this new one will do right by you. If not, you'll need to see someone who works with FM. The best of luck!
 

Undaunted

New member
Joined
Feb 6, 2015
Messages
6
Reason
DX FIBRO
Diagnosis
04/2016
Country
US
State
OH
I've had my thyroid checked multiple times, but my T4 and TSH levels have always been within the normal range. They've also checked hemoglobin and ferritin levels, as well as vitamin and mineral levels to rule out things like anemia or B12 deficiency. Everything is normal in my blood work. I haven't had a trigger point test yet; I plan on having that done in my next appointment.
 
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