Letter from Niki
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First Name: Niki

Male or Female? Female 

When were you diagnosed ? March 2008
 
How long did it take to get a diagnosis ? 6 mths.
 
Your age at the onset of symptoms, apox? 28 yrs old
 
What were your first symptoms? Severe knee pain, upper shoulder pain, IBS, Swollen painful joints, tired all the time, just general achy sick feeling.

What are your current symptoms? Severe upper back pain, muscle spasms, IBS, Painful urination ( I have interstitial Cystitis), Knots in muscles, fatigue, insomnia, brain fog, numbness and tingling in arms/fingers, Jumpy leg syndrome right as I am dozing off to sleep my whole body twitches and jumps it's very annoying. Pain in joints thru out my body one day it's the right hip, the next my left knee. With my knee pain it literally feels as though someone is prying my knee cap off with a oyster knife. I now walk with a limp in my right leg, I'm very clumsy and often trip, stub my toe, etc. My leg will often give out on me. I cannot drive, sit, stand for longer than 15-20 minutes at a time. I can no longer grocery shop by myself because pushing the buggy kills my arms. 

Other clinically diagnosed conditions ? Stage IV endometriosis, Interstitial Cystitis, IBS, Rectalperitoneal fibrosis, pelvic floor myalgia, migraine headaches, hashimotos thyroiditis, chronic myofascial pain, failed back syndrome, insomnia,ptsd, generalized anxiety disorder, panic attacks, duodenal ulcer, GERD, inflammatory arthritis (yea my rheumatologist is a real genius, all arthritis is inflammatory but he can't tell me what kind of arthritis it is.) 
 
Are you still working? NO
 
What line of work? I use to clean condos on the beach and before that I was a office manager for a collection agency.
 
Are you disabled from Fibromyalgia?Yes 

Have you filed for disability? YES

What results from the filing ? Waiting on a court date. I originally filed on October 31, 2007. I filed my appeal on March 7, 2008 and currently awaiting a court date. I have hired a lawyer to assist with the appeal.

Any prior injuries or trauma? Numerous laporascopies to remove endometriosis. What caused the fibro was on Oct 2, 2007 my obgyn gave me an injection called lupron depot to treat the endometriosis. He told me it would help us be able to conceive easier and quicker. His exact words were "I promise in 6 weeks you will be pain free." After suffering daily from abdominal pain, stabbing sharp pains that shot up my rectum and vaginal canals, cramps so bad during menses that I would lay on the bathroom floor curled in a ball crying and vomiting.  Pain free sounded really good. He told me my only side effects would be those suffered with menopause, Hot flashes, moodiness, nightsweats and vaginal dryness. He forgot to mention the severe joint pain I would wake up to two days afterwards. Joint pain so severe I could not bear weight on my legs and my husband had to carry me to the bathroom and to the dr's office.   
 
Major illnesses ?Just your typical colds, viruses, strep throat and tonsilitis. 
 
Does exercise help? And if so, what kind ? Stretching seems to help a little. Also pool therapy. I did notice with it though, I would hurt really bad some days.
 
Have you ever have a long lasting virus? No
 
How has FM affected your life? It stole my life and my dreams from me. I went from being happy outgoing very active except during my menses to being basically crippled. I'm no longer able to work and contribute to our household, do things with my children. I lost my ability to have more children. I cry on a daily basis because I can no longer do the things I want to do. Instead of getting my entire house clean in 2 hrs I'm now lucky if I can get half cleaned in 2 days. I can't just get up and go places. It all revolves around how I feel when I get up and get moving. I have to have my husband drive me places, assist with the grocery shopping, etc. I feel guilty. 

I cry for the loss of my body, the grief I feel some days is overwelming. My husband is so good to me. He works long hours then comes home and helps cook and clean and bath kids, whatever I was unable to accomplish while he was at work. He never complains. I know he must feel resentment toward me even though he says he does'nt. He didnt sign up for this when we married and had kids. I know I'm resentful that this happened to me. I didn't sign up for this. I hate the new me. I want my old life and body back. I hate these damn illnesses and symptoms. And the meds and all their side effects just make it ten times worse!
 
What makes symptoms worse? Overdoing it. Repetitive movements over and over, lack of sleep, trying to be the old me. Walking or standing longer than 15-20 minutes makes me feel like my back is snapping in half. I get a heavy achy feeling in my lower abdomen. 
 
What makes you feel better? Hot baths, my heating pad, resting as much as possible. I also see my brother in law twice a week for a deep tissue or swedish massage. Depends on what my upper back ( feels like* ) where I stay so spasmed, (I *) can tolerate at the time. I also take oxycodone 15mg 4 times a day as well as zanaflex 6 mg 3 times a day. It seems to help make the spasms and pain more tolerable. 

Been admitted to a hospital for pain? I've been to the ER several times for pain, but never admitted or kept overnight for it.  

What remedies or medications have you tried? 
Mobic never did anything to help it. Lyrica made me extremely dizzy and drunk feeling, flexerell made me so drugged I slept for 18 hrs straight. dh could not wake me up and I felt so hungover the next day like i had been out drinking all night long and cottonmouth. Ultram when I first started taking it, it helped a little bit. Ultracet did not do a thing. Darvocet helped if I took 2 at the time. morphine IR and ER had a severe allergic reaction to. Ended up in the ER with anaphalactic shock. Oxycontin helped, but wore off way before the 12 hr mark. after being on it a month I would wake up in the mornings all panicky feeling, shaky, it would wake me up, come to find out I was going thru withdrawals from being later taking the meds. SCARY. 

So immediately called my dr and stopped taking it. Percocet 10 mg helped alot. My dr switched me from percocet to the longer acting oxycontin. Then from oxycontin to my now oxycodone 15mg 4 times a day. It makes the pain a tolerable level. when the pain is really severe the oxycodone does not do a thing for it. I take zanaflex as well and honestly it doesnt seem to work that great for the muscle spasms. I think my body is immune to it. In the beginning (3/08) it worked great. I've since been on it over a year now and I think my body is just tolerant to it. He just increased it from 4 mg every 8 to 6mg every 8 hrs and honestly I don't notice much help from it. I plan to bring up switching it for a month or so to maybe skelaxin or somas to see if those will work better at relaxing my muscle spasms.
 
What results did the remedies have ? 
See Above
 
Comments
Thank you so much for all your hardwork in creating the webpage. A friend shared it with me and I have found it to be extremely helpful with lots of great advice and tips, very informative! I also learned alot I did not know about FM. Please know that all of your work in creating this page is very appreciated. Thank you again for taking the time to gather all the information and putting it on here for all of us. Take care and rest often. Many prayers for pain free days for all of us! God Bless!
 

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