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daleo717

Member
Joined
Feb 23, 2014
Messages
29
Reason
DX FIBRO
Diagnosis
03/1995
Country
CA
State
British Columbia
Hello, I am a lady from Vancouver, British Columbia. I am 60 years old and I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia when I was about 40 years old. I actually cannot quite remember the exact date. I would have long periods of being severely tired for about 3 weeks at a time. It would not matter how long I slept, even if I slept for 9 - 10 hours. I had been taking thyroid medication since I was 26 and used to think the fatigue was caused from that. Finally I went to my Dr. and he told me he thought I was suffering from chronic fatigue syndrome.

At that same time I was suffering from several skeletal disorders such as 2 herniated disks in my back and also hip pain and tendonitis in my right ankle. I was having trouble sleeping from the pain etc. When my Doctor would test out different pressure points he noticed how much pain I felt just by him placing his fingers on parts of my body.

I had also been complaining about a sudden type of arthritis pain that would come on suddenly usually in the morning when I awoke. It sometimes felt as if someone had put elastic bands around my arms and legs. It was at that point that he diagnosed me with Fibromyalgia. This was at a time when this term was very new and a lot of people, said "it must be all in your head". It was really nice to hear that it had a name and I was not going crazy.

I hope to get and give support on this forum and look forward to hearing about other people's experiences with Fibromyalgia and Chronic Fatigue Syndrome.
 

Jennyflower81

Member
Joined
Mar 3, 2014
Messages
15
Reason
DX FIBRO
Diagnosis
07/2013
Country
US
State
RI
Hello. I'm from Rhode Island, USA, and I was diagnosed with fibromyalgia last July. My best friend was diagnosed before I was, and she insisted that I had many of the symptoms. I agreed with her. I had complained to my doctor about chronic pain since I gave birth to my son 4 years ago. She had told me that the extra "baby weight" was causing my pain, and I'd feel better after losing the weight. I also had Reynaud's syndrome symptoms, which my doctor first thought was a result of hyperventilation. After I lost the weight, I still felt pain and fatigue. I printed out a list of fibromyalgia symptoms and checked off the ones I was experiencing. I brought the list to my doctor, telling her that I really thought I had fibromyalgia. She agreed with me, and sent me to a Rheumatologist to be formally diagnosed. I had 3 Rheumatologists agree that I had fibromyalgia. This wasn't the end of my journey. As my symptoms persisted and progressed, my best friend had a more serious diagnosis- Ehlers-danlos syndrome. She told me that I had very similar symptoms. I asked my primary care doctor to refer me to a genticist, who diagnosed me with EDS. What a coincidence that me best friend and I both have the same rare disease. The EDS community is certain that this disease is not as rare as experts claim it to be.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
Hi daleo717,
Welcome to the forum. Dealing with fibro symptoms is a contant battle and having held the diagnosis about as long as you, I remember that opinion that it was all in our heads or it was made up cause we were lazy. Wow, those wonderful zingers other people and doctors could throw at us to make us feel totally dumb for even asking or mad, because we were not taken seriously. Sad part is many today still share those opinions which makes life extra rough for those just diagnosised.

I am glad you found the forum and I hope you will stay around a while and join in giving some of your time-tested hints and coping skills, that have worked for you over the years. Place more questions and vent when you need too. Glad you found us. :)



Could you please tell us a little bit more about your second condition of Ehlers-danlos syndrome, Jennyflowers81. And by the way a big welcome in to you as well. :)
 
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