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Long-winded post and a couple of questions...
1 Replies
michelle_lea - April 11

I'm new here - I've found this website to be a huge source of help and information. It is so nice to be able to talk with others who are experiencing similiar problems!

First of all, I am 20 years old, a little overweight, but in good health - I take great care of my body and have a healthy diet. I have a couple of questions, but wanted to give a little bit of history.

In early November 2007, I started feeling sick... fatigued and nauseous constantly and doing simple household chores made me dizzy and lightheaded. I had ringing in my ears and vision problems with blurriness and dots. I had severe headaches that would progress as the day went on and severe abdominal pain. I also started becoming sensitive to heat - ie: taking hot showers and being around our wooden stove downstairs. I had tingling and numbing in my face as well.

I was living in Rhode Island at the time and was so ill that I wasn't able to work and actually lost my job as a nanny. My sisters were a great support to me, and because of the way I was feeling, they were constantly researching to see what I could possibly have. Trips to the hospital ER proved to be fruitless as nothing came from the tests or scans. To say that I was frustrated is BEYOND an understatement!

Fast forward to the end of December... that's when I started having pain and muscle spasms. At first it was just my shoulders and back, but gradually grew to my neck, arms, and jaw. I woke up in the morning feeling like I had been beat up or hit by a semi-truck. I started having problems concentrating - I was trying to do some design work on the side to make extra money, but because of the concentration issues and vision problems, I wasn't able to complete most projects.

Then into February, I still didn't have any answers. I was sent in for a CT scan of my brain and nothing came back from that. Then I started having extreme pain on my right side and began having attacks - it ended up being my gallbladder. I had a lot of stones; the doctors and surgeons said it was from the rapid weight loss from being ill. (I had lost roughly 35 pounds since falling sick.) I ended up having my gallbladder taken out as a result.

Shortly after the surgery, because of the widespread pain and all of my symptoms lasting for months, my doctor in Rhode Island diagnosed me with Fibro. Because of being so ill, my parents wanted me to move back home to Indiana so they could better assist me and help me financially.

After moving back to Indiana in early March, I began seeing my family physician again. She put me on anti-depressants and an anti-seizure medication (to act as a muscle relaxer). I am taking Tylenol like nobody's business because of the pain, but it's never good enough. Because of not being able to work, I don't have insurance, so she wanted me to transfer to a low-income clinic. I went and registered a few weeks ago, and they can't get me in until May 6th... beyond frustrating, because I am in so much pain!

Now that you semi-have my history with this condition, I have some questions...

My friend, who worked for years as a nurse, is convinced they should have done an MRI instead of a CT Scan. She thinks an MRI could rule out Multiple Sclerosis, which she thinks still may be a possibility. Any thoughts on this? Were any of you tested for MS? She said the CT Scan has at least ruled out a brain tumor, because that for sure would have been picked up.

I have had very little problems with my legs until a few days ago. The pain has mostly just been from my stomach and up. Once and awhile when my nieces and nephews came to sit on my lap, I would have bad pain and had to have them get down. But now, I have this radiating pain on the back side of my legs, up toward my butt (to be frank!). It hurts to walk, sit down, bend over... For some of you, did all of your pain come at once? Or did it take some time for the pain to gradually increase in different areas of your body?

Finally, have any of you filed for disability? My doctor thinks that might be the best option at this point, so I can get insurance and just get better so I'm able to work again. I miss being productive and working! I've always been extremely active until I started getting ill. I'm just not sure how it works quite honestly, and if I would even have a good chance of getting approved since I am so young. Thoughts on this?

If you've stuck through this far, thanks so much for reading. I appreciate it more than you know! I'm sure I'll be back with more questions. And thanks to the creators of this site who have worked so hard to publish their findings and information.

Blessings to all,


Fantod - April 11

My issue with FMS started with degenerative disc disease. I had a lot of pain in my lower back and legs. It took quite sometime for the severe pain to dissapate. However, I was still having a fair amount of discomfort in both legs. A pain specialist finally put me on gabapentin for nerve pain and that certainly helped.
I know many of the folks on this board have been elvaluated for MS, that is not out of the norm.
My level of pain varies quite a bit. I can be completely incapacitated for one day, a week or longer and then have a day or more where I am able to get a few things done. Have you looked at the pressure point chart on this site. Do your symptoms match? Everyone has different levels of pain on any given day.
I have not filed for disability but I do know that most people are denied at least once. It can take years to be approved.
By the way, Tylenol is really not effective for the type of pain caused by FMS. Taken in large amounts, it is not good for your liver. You should be using gabapentin or Lyrica. Also, if your sleep is disrupted, your muscle pain willl be worse as they are not getting the rest they need. Most of us are on Amitriptyline for sleep. I certainly understand your frustration and bewilderment. This is a very hard thing to deal with particularly without health insurance. Michelle, keep in touch and let us know how you are doing. Take care.



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