New to forum- I'd like to introduce myself.

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New Member

Date Joined Jan 2009
Total Posts : 13
   Posted 2/2/2009 2:21 PM (GMT -6)   
Hi to all!
I am lucky to have found this forum, as it really does seem like a supportive and warm place to be. I'm sure that all of you are very aware of just how isolating and lonely this illness can feel! I try my best to remember that I am NOT alone, and not the only person suffering from this condition. While there are many things that I cannot control, I always try to be mindful of the way that I resond to stress and my pain. Anxiety and depression are a problem for me, but I refuse to fall into the trap of feeling sorry for myself.
So, my background (being as brief as possible) goes something like this:
I had a normal pregnancy (with healthy blood work- ie hiv-, CBC, gestational diabetes) and birth in 99/00. During the pregnancy I did suffer from multiple urinary track (UTI's) infections. about three months into post partum I started suffering from severe post partum depression and OCD (scary thoughts). I lost my appetite due to the emotional stress and in turn lost a lot of weight. I struggled with PPD for what seemed and seems like longer than I should have, as I was still having symptoms well into the my child's toddler years. I was given various SSI's and Xanax for panic/anxiety.
Around 03 I started getting sinus infections that wouldn't go away. I also started having intense facial pain that would increase during thunder storms or rainy days. Upon waking up in the morning, my feet would feel like rubber when they touched the carpet. They would have a subjective feeling of swelling and sometimes pins/needles. Also, my legs would cramp at night and ache much like they did when I was a child. My mother used to call the pain that I had "growing pains".
As my health seemed to get worse and worse, my OCD would kick in. I thought I had cancer or hiv. I'd go to the doctor on what most would consider a constant basis... It seemd to be one complaint after another. I had several CBC's (and other blood tests) and was always told that I was just "anxious". I felt tired and "not quite myself" for year after year". By 2005, I started gaining weight. I had more blood work done. "Normal". In that period of time I lost and gained weight in a yo-yo fashion. I always seemed to have a cold. Also, I'd have subjective pains, IBS symptoms, headaches, TMJ (a dentist suggeted), nasal sores/ congestion, strange skin sensations, rashes, hair loss, and a feeling that I was hung over (without drinking, of course) upon waking. I thought for sure that I had Lupus, but was again told that I was "anxious".
In late 05 I had a yeast infection unlike any that I had previously had. I started having the urge to urinate up to 40 times a day. The skin surrounded my urethra was inflamed. Sex was another nearly impossible task. The pain would continue long after intercourse, sometimes bringing me to tears. I was put under another battery of testing. The diagnosis was "IC". The IC nearly drove me crazy, for the lack of a better word. I am still battling it, but it doesn't seem to be as intense as it used to be. Maybe I am just used to it by now?
By 07 I had lost so much weight (underweight for height) that my doctor sent me to the Gastro. I was told that I had IBS and GERD. My weight loss was attributed to "stress" (ugh!) and a possible side effect of Effexor. By that time I was just sick and tired of being sick and tired. My tail bone started to hurt. The pain was so intense that I found sitting impossible. Also, my pelvic region hurt. I ended up taking a trip to the ER after experiencing lower quad pain that was so intense it took my breath away. I was told that I had an ovarian cyst rupture. Great, right? They sent me home with a bottle of Naproxen and a, "have a good life".   
My tail bone pain was finally given a techinical term: Coccydynia. After months of crying to the doc, they put me on Percocet. Needless to say, it knocked me through a loop. The pain was managed, but the side effects added to the problems I was already experiencing (fatigued, nauseas, dry mouth and so forth). It was like a catch 22. The doctors didn't want me to stay on such a heavy narcotic, so they sent me to a pain clinic. The particular clinic I sent to did not use narcotics. There, I was assessed by  Anesthesiologist that, for reasons I cannot remember now (darn this fibo fog! ;)), suspected Fibromyalgia. It was like a blessing and a curse, hearing an actual collective name for what seemed like too many seperate disorders.
I was given a few treatments at the clinic, but (sadly) they didn't help the pain at all. So, back to the primary doc.. I ended changing doctors twice. In the end, I found a doctor that has been trying to work with me (very important, yes). The only problem now is that she and I both are frustrated. She doesn't think that Fibromyalgia is a progressive illness, but it seems like it for me. My symptoms are piling on (joint pain, Costo-sternum pain, increase in pain severity) and she's probably tired of seeing me every month. I am being treated wiht pain medications, but this isn't something that she is very fond of. Even though she is a very sweet doctor, she does tend to make me feel like I should man it up, so to speak, and do without pain medication. OTC's seem to do little to touch my pain, and the arthritis meds make my IBS roar.
Oh, I should also note that I have allergies and asthma. The asthma was dianosed over the summer. I've had ear pain and fullness since last spring. I've recently ran a course of antibiotics, and noticed some relief during, but now the pain is back- and I have a burning sensation in my mouth (being treated). Oh! I'm seeing a rheumatologist soon. My Dr. thinks it might be time for a second opinion, and I agree. It seems like all of my treatment steps have been out of order to begin with. It's a little scary, but I'd rather have a concrete dianosis than go untreated (be it RA, MS or Fibro).  
I could go on forever, but my fingers are burning and I'm not in the mood for writing a novel! ;)
Anyway, thanks for welcoming me to this forum. tongue I'll probably mostly lurk, but again, it's nice to know that I'm not alone. :-)

Forum Moderator

Date Joined Apr 2005
Total Posts : 17055
   Posted 2/2/2009 2:29 PM (GMT -6)   
Hi, Steffiel, and welcome!  I'm so glad you found us and joined in.  Many of the things you mentioned in  your post has happened to many members on this forum so you definitely are not alone. 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia in it including a list of symptoms and also some good stretching exercises that really do help.  There is also an link called What Else Could It Be?  I"m sure you realize that fibromyalgia symptoms can mimic other illnesses too.  That's why the other illnesses need to be eliminated before a diagnosis of fibro is given.
I hope you do join in and ask questions.  That's what we are here for.  I am really glad you joined and I hope to hear more from you soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

New Member

Date Joined Jan 2009
Total Posts : 13
   Posted 2/2/2009 2:42 PM (GMT -6)   
^Thank you, Sherrine. I'll definitely check into those resources on a more in depth level. :) Thank you for being so welcoming and kind. I'll be sure to follow up after my rheumatology appointment.

Regular Member

Date Joined Dec 2008
Total Posts : 478
   Posted 2/2/2009 5:34 PM (GMT -6)   
Hi Seffiel,

Welcome to a great group of "friends" that really care. I have found it a life saver as I know exactly what you mean about the loneliness. Life definitely changes for us with Fibro but we have to fight it head on!!!

Don't hang back and just lurk, join in and I bet you feel much better. I do.


Veteran Member

Date Joined Jun 2008
Total Posts : 716
   Posted 2/2/2009 5:59 PM (GMT -6)   
Steffiel, Welcome.  I know what you mean about this being a lonely illness.  I can be in a group of people & feel alone, sometimes.  To know that those people don't understand me even though they have known me for years.  I use this forum as my Fibro family.  We all need a place where we feel like we are accepted & ok.  I don't often speak to others about my illness, except my daughter who also has Fibro & on this forum.  You will find good friends, good answers & good times here.  I hope you stick around & let us get to know you. Hugs, Denise 

 I have:  Fibromyalgia, CFS, Holt-Oram Syndrome, nasal allergies, depression, TMJ

Meds: Ibuprofen 600mg every 4-6 hours, Cyclobenzaprine 10 mg, Simvastatin 20mg, Citaloram 20mg Melatonin 5mg Sublingual, B12 sublingual, B Complex, Folic Acid, Omega 3

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 2/3/2009 8:43 AM (GMT -6)   
Hi Stefffiel!!!
Welcome!! Wow it sounds like you've really been thru the wringer!!
Denise really hit the nail on the head when she said she can feel very lonely even in a group of ppl. It can be so frustrating!! GRR!!
Again, welcome - I look forward to getting to know ya!
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel. 
Meds = Elavil, Tramadol, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown

Veteran Member

Date Joined Jun 2008
Total Posts : 1279
   Posted 2/3/2009 10:17 AM (GMT -6)   

Hi Steffiel and Welcome-

I lurked too for quite awhile- but the minute I joined I began to feel better. Sounds alot like fibro to me. Hope the rheumy can get this figured out for you- you have been through alot!



Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
Zoloft, Tylenol 4000 mg., Darvocet  

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 2/3/2009 11:25 AM (GMT -6)   
Hi Steffiel and welcome. I'm so glad you joined us. I was one of the lucky ones that had a doc diagnose me before I knew anything about fibro. I have no one in my family or know anyone with fibro so this forum was a godsend to me. It is hard when no one outside of this forum has any idea what you really feel.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
Co Q 10, Super B Complex, Extra B12, Multi vitamin

New Member

Date Joined Jan 2009
Total Posts : 13
   Posted 2/4/2009 11:24 AM (GMT -6)   
^Thank you to all of you, truly. :) I appreciate your taking the time to say hello. I'm going through the archives here... Yes, it does seem like I share a lot of the same problems!

I should update and give my official "labels" (as of now):

Fibro (unless the Rheumo says differently, this is my official diagnosis of the moment)
Costochondritis (one of the worst! It's horrible)
Panic Disorder/ OCD
Eustachian Tube Dysfunction
Tendonitis (wrists)
Fibrocystic Breast Disease
Ovarian ("cholcolate") cysts

^It does look like a big ole mess on paper, doesn't it!! LOL. I mean, it's not really funny but you have to laugh or you'll cry. ;)

I should also mention that I'm having a major problem with my tongue/mouth at the moment. I have no idea. They treated it like thrush (though they said it didn't look like thrush), but I still have a burning sensation. Anybody else have a problem with burning mouth sensations and bad tastes?

Post Edited (Steffiel) : 2/4/2009 9:27:15 AM (GMT-7)

Veteran Member

Date Joined Nov 2008
Total Posts : 1097
   Posted 2/4/2009 11:29 AM (GMT -6)   
hi steffiel!

i'm so sorry-i just saw that i hadn't said hello to you yet! (i forget which new people i say hi to sometimes..thank you, fibro fog!)

anyway-i would like to welcome you to this wonderful family and say that yes, i get the tongue/mouth burning sensation and the bad tastes. sometimes my tongue feels like it's been burned on something hot (even though it hasn't) and sometimes it feels like theres a weird film on it and sometimes i get this weird bitter, almost metallic taste. i am not sure what causes this...just one more joy of fibro, i guess..
love and hugs

fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck

Regular Member

Date Joined Jan 2009
Total Posts : 55
   Posted 2/4/2009 2:59 PM (GMT -6)   

first off, WELCOME!! You will love it here.

Second, your list might seem long on paper, but the good news is that most of what you have look to be symptoms of a bigger diagnosis...FIBRO. Of course, the Rheumy will be better suited for your full diagnosis, but that is what it looks like to me. I had a similar laundry list of issues and we just kept trying to treat the individual symptom before being diagnosed with Fibro. I had 3 surgeries that I probably didn't need...and lots of other stuff that i just "chalk up" to Fibro. I sympathize with the IBS and how it flares with a wrong move. Your diet has a lot to do with getting a lot of these symptoms in check and under control. You can live with Fibro!! :-D

Keep us updated on the Rheumy appt. Happy Hump Day!
24. Diagnosed with Fibro in Aug. 08 and Seasonal Affectiveness Disorder in December 08. Gluten free since Nov. 08.
Surgeries: Compartment Syndrome/Medial Tibial Stress Syndrome Dec. 05; Lap Nissen Fundoplacation Aug 06; Exploratory Lap Feb. 08.
Played college soccer. Going back to school to be a Registered Dietitian.
"I control the disease, it does not control me."

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