Fibromyalgia Community
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1125587 tn?1259716816

28 years old...going on 95

this is really long, it's my first time, sorry:
i am 28 years old but most of the time feel like i'm pushing 100.........it all started about 5 years ago. first i had a severe abscess on my left tonsil which put me in the hospital for fear it would block my breathing, followed by removal of my tonsils (not adnoids) 6-9 months after my hospital "vacation".  about 2 years after that- my gallbladder was removed after 1 doc telling me to do pilates to "bring it in around the belly", pretty much telling me i'm fat and this is what was causing my severe bouts of abdominal pain. (i was 5'7" and 155lbs at the time)....after a month of killing myself at the gym and getting depressed about my appearance, the pain persisted so i went for a 2nd opinion,  i was diagnosed with gall stones and had gallbladder surgery w/in 3 days of diagnosis given the size and severity of the stones.  later that year, i began experiencing very severe low back pain, odd radiating joint pain in pretty much all joints: shoulders, elbows, wrists, hips, knees and ankles and i was sleeping most days 12-14 hours (working full time too).  i missed a few days of work and slept for almost 40 hours at one point.
i had always had some degree of back/neck pain since i can remember and chalked up the joint pain to age and/or just being out of shape, the fatigue i figured was just my body saying i needed sleep??, this pain however was much different and worse.  the fatigue was interfering with my job, my family and my sanity.  i could not stay awake, fell asleep at work, had a hard time driving and trying not to nod out.  i went to my GP, who sent me to a neurologist, he put me through every test imaginable and everything (RA, lupus, MS....) came back negative.,  i requested a lyme disease test which also was negative.,  he diagnosed me with fibro/cfs in addition to a herniated low back disc and various multiple bulging discs throughout my spine.  he believed that some of my pain was related to pinched nerves b/c of the herniation and or bulges.  at any rate, i have been on all sorts of medication for pain, narcotic and non-narcotic.  for the fibro we tried gabpentin first, this did nothing and made me more dizzy and sleepy than ever.  then i switched to cymbalta.  while my mood and general demeanor is improved, i am still in pain on a regular basis.  in fact, as i sit here, my knees and ankles are radiating pain.  i was advised that the back pain may also be part of the fibro??
now that i have rambled about how i gotten to this point, my real question is: is fibro/cfs an actual diagnosis? i feel like i was just tossed to the wayside and given a "catch all" diagnosis b/c none of my doctors want to pursue anything further.  my general feeling from my dr is that he thinks i am in this for the medication or attention.  the attention factor is what i generally get when telling family, bosses, co-workers or others of my diagnosis - they think i'm a hypocondriac (sp?) and that i just need to have something wrong with me.  How do i get around that stigma?  at this point i do not even disclose that this was what was diagnosed for fear that i will be looked at like i am crazy. not sure what to do.  any suggestions????

"crazy" ashley
2 Responses
975514 tn?1325001538
Hello and welcome,
Don't ever feel crazy. I have been through similar experiences. I have FMS, a mild case of CFS, degenerative disc disease as well as facet osteoarthritis of the spine, mild scoliosis, nerve damage that has caused my left foot to go numb permanently plus a whole slew of other ailments. I had a shoulder surgery to remove a bone spur etc.

Here's the deal, you don't feel well and Fibromyalgia/CFS is a real ailment. Everyone who gets the diagnoses goes through a period of non acceptance, but that is only due to the fact that doctors don't know enough about the disease, and don't really know how to treat it effectively. So when they seem uneasy about it or uncomfortable, it's really easy for you, the patient to feel uncomfortable about the diagnosis too.

There is a lot of new developments and research coming out lately- especially about CFS. When you have some time google to learn more about the new retrovirus called XMRV. It just was discovered and published in an article back in Oct. This is big news for people who suffer from CFS and possibly FM too. Let me know if you need more details and I can PM you.

Also, what type of doctor treats you right now? It's best to be seen by a "fibro-friendly" Rheumatologist. Rheumatologist are the doctors who created the standards to actually diagnose Fibro, so if ever you were to need to take a leave of absence from work, or file for any kind of disability, you need to have a Rheumatologist see you.

I found my doctor by searching the National Fibromyalgia Association website. You do have to register to sign up with them, which is free, but once you do, they allow you access to search for health care providers within your state. The site address is http://www.fmaware.org/

Like I mentioned before, if there is anything you need clarification on feel free to let me know or send me a message. Thanks for joining our forum!
Avatar universal
Have you looked into Lyme disease?  Your state is endemic for Lyme.  It can cause a large number or your symptoms.
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