Feeling lost and out of place

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New Member

Date Joined Sep 2008
Total Posts : 5
   Posted 9/4/2008 12:32 PM (GMT -7)   

Good Day Everyone!


I am new to this, not sure what is going on with me… and was wondering if anyone could help me. I did post on the Lupus forum, I am so confused. Here goes….


2 years ago I had a colonoscopy ~ after months of passing blood  I decided to get checked out. I should add that I hardly ever go to the doctors, if I am there its for the kids. At first my doc said crones (misspelled) as my older sister has that, then intestinal cancer…. At this point I am still waiting to get in for this colonoscopy so you can only imagine what my mind was going thru as well I had gained over 80 pounds which I think was totally stress related… I had never been like that (even when pregnant I’ve only ever been 132 not 180). Long story short, turned out to be pollops – not cancer, they were removed and I was supposed to be good to go….hahahaha


Since then I have suffered with severe headaches, so bad at times I have slept on the floor of  my closet, hair loss (sometime worse then others) loss of appetite, up and down with weight, sleeping problems ( want to sleep when I shouldn’t and up when I should be sleeping ), extreme tiredness, loss of interest in many things, joint pain, stiffness in my neck and shoulders are very bad, and even a back rub either hurts or doesn’t even help, sensitivity to lights ( could live with sunglasses on all the time – also the sunglasses helps with the headaches) a cough that I have not been able to shake, hyper-sensitive ( one minute I am happy go lucky, next minute I am mad, angry or upset… and I can’t tell you why, bruise easier,  ringing in my ears, swelling in my ankles, feet and hands, dizzy, trails when I turn my head to fast or flashes, redness in hands, feet and hands always cold, legs and feet fall asleep when sitting for too long, back ache, and I am sure there are a few more I have not mentioned. Overall I am a 28 year old who feels ( not to be rude) like a 90 year old woman. I just wish sometimes that someone would take a baseball bat to every bone in my body, break it, and then set it again… maybe it would make it feel better… does that make sense???


My second pregnancy did not go well at all (Nov 07)– was horribly sick, morning sickness at all times of the day, not gaining weight, LOTS of stress, lost a few loved ones in ’07,severe headaches.. doc gave me some excuse but monitored me and said that I was fine. Ended up having an emergency c-section ( we almost didn’t make it ) and since having my son, my body feels more broken then ever – that sounds so bad…. L Also I find it weird that my incision still has not healed all the way – it is still rather raised, red and numb to the touch…. Doc says we all heal differently…


After returning home I noticed that my right arm was numb from the elbow – down the wrist and around the thumb. On one of my son’s visits I mentioned this to my doc – he said it was a pinched nerve… its been 10 months and my arm is still numb. Sometimes it tingles, burns or itches so bad... Lately I have found that the strength in this arm is depleting – somedays I can hardly open a pickle jar or hold a pen long enough to write a letter.


My lack of faith in my doctor could possibley be the worst thing for me – but its hard to switch doctors – not all doctors have available space, and walk in clinics are a waste of time.


I guess my guess my question is does this sound at all familiar to anyone???? I will admit that I have good days and bad days.. but the general stiffness and joint pain is always there.. and Tylenol is just not working anymore… I think now after writing this I will go make a doc appt – let see what he says this time.


Thank you for taking the time to read this – I do appreciate it.



Irish Babe
Veteran Member

Date Joined May 2007
Total Posts : 1380
   Posted 9/4/2008 1:15 PM (GMT -7)   

Hi Chevyrane, First of all, Welcome to the forum, just sorry you are feeling so badly. Going to your dr is a good idea, but may I suggest you go to the thread on the first page here called Fibro 101. You will find a lot of good info, including a list of symptoms of FMS. Copy that out, you will see so many of your symptoms, check them off, bring them to the dr. visit.

I had a lot of prob w/ my pregnancies, also. Lost the first baby, deathly ill for the second, couldn't eat, always vomiting from the beginning till the day I had my son. Bled thru my 3rd preg, plus all day 'sickness' again. Also, each surgery I've had the scars are fierce and the whole area is numb. I was told that I should get some feeling back by 1 yr. If not, it isn't coming back - It isn't coming back!!!  I have had 3 surgeries, tubal ligation, gall bladder, hysterectomy, I can't feel my skin under my belly button. Any clothing rubbing against the skin sends me into a fit.

I'm having a prob w/ my shoulders/hands and my knees right now, so I know how miserable that is, I would suggest some gentle stretches. They won't make your pain go away, but if you don't move, believe me you will feel worse. I could have written your post, so I do understand your pain.

Read over some of the other posts, for one you will see that you're not alone. Secondly, you might get some ideas that may give you some relief. Hope you feel better soon.    God bless.  Alice.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17501
   Posted 9/4/2008 1:29 PM (GMT -7)   
Hi, Chevyrane, and welcome to the fibromyalgia forum.  I'm so glad you joined us.  Unfortunately, most of what you said has happened to me.  With fibro, you feel like someone has beaten you with a baseball bat.  Some days I hurt all over and other days I hurt is certain places...but I always hurt.
Your hands sound like you have carpal tunnel.  I've had that too and many with fibromyalgia deal with that.  Yes, my hands got very weak and I couldn't open jars.  I still have some problems but not as much as I used to.  I remember trying to tip the food out of my crock pot to a platter and dropped the whole meal on the floor because my hands weren't strong enough.  So, you are not alone there, either.
It sounds like you may have a keloidal scar.  When I had surgery my scarring was raised, reddish, and hard.  It hurt to have waistbands pressing on it.  For me that lasted years and then it is now finally fading.
Headaches and sensitivity to light are also symptoms of fibromyalgia.  Check out the Fibro 101 thread...the second thread on the forum.  There are links to some good info about fibromyalgia, including a list of symptoms.  I think you will see a lot of what you are saying in the list.
Tylenol by itself does not help me much at all.  I take ibuprofen for pain and also started taking malic acid/magnesium supplements for pain and fatigue.  So, I do have control of the pain.  Some members have to take narcotic pain relievers, some take antidepressents, etc.  We are all different and we have to just try things to see if they help us.  What works for one might not work for another.
Read past posts and ask questions.  We are here to help you.  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

Veteran Member

Date Joined Jun 2008
Total Posts : 726
   Posted 9/4/2008 1:54 PM (GMT -7)   
Welcome to the family.  I think you'll find a lot of info and great people here. :-)
OK-to answer your question-"does this sound familiar to anyone?"  My answer?  Uh, YEAH!  tongue LOL.  In fact, your symptoms sound almost exactly like mine (except I don't have kids).  I've been in lupus limbo for almost a year now, but I post over here because I DO have fibro (and I like the people, LOL).
Like you, I have been dismissed as crazy for most of my 36 years.  Last year, I finally found a doctor who would help me-not write me off as a nutcase.  So, yeah, in my opinion, I would change doctors, and if there's any way to pick your doctor, I'd make sure he/she was familiar with both fibro and lupus.  Then, if necessary, your new doc can refer you to a rheumatologist.  It may take awhile (it took me almost 7 months to get the referral), but hopefully you'll get some answers.  In the meantime, everyone here is on your side, OK? wink
Anyway, I hope I helped a little.  Feel free to ask me any fibro (or lupus limbo) questions.  You'll soon find out how much I love to talk! smilewinkgrin
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
"I'll take the Chivas instead"
-Kelly Clarkson

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 9/4/2008 2:01 PM (GMT -7)   
Hi Chevyrane and welcome. You have already been given some good advice. I'm sorry your going through so much. I hope you can find a doctor that will do the necessary test to rule out any other problems it could be so you can get a dx. The not knowing can drive you crazier and cause more stress. Stress is our enemy, fibro loves it when we are stressed. The weather change today has fibro having a good old time with my body. We are getting lots of rain in central Illinois from Gustav.
Try warm showers, baths, rice bags you heat in the microwave that are easy to make with a long tube sock and uncooked rice, a moist heating pad anything that has moist heat is our friend.
Print out the list of fibro symptoms and see how many you have. Read all you can, ask questions and vent when you need to, we are here for you.
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

Regular Member

Date Joined Jul 2008
Total Posts : 368
   Posted 9/4/2008 6:38 PM (GMT -7)   
My biggest problem is also i have no faith in my doctor, I know deep down he thinks im a hypocondriac and its constantly on my mind that if I need the help he will let me down and then what would I do,  Im afraid I obsess about it constantly.  I have some of your symptoms, forgot to check if youd mentioned your meds, I am finally treated but only because I took myself to e.r and they contacted my doc and told him to treat the symptoms and send me to specialist.  Took two specialist  but finally got one on side.  Try find energy to go to another doc in between visits  and ask to see either pain specialist or rheumy. My heart goes out to you, it is a long battle which took me two years but only because I sat there.  Good luck and hugs to you.    suez2 sad sad sad
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica

Regular Member

Date Joined May 2008
Total Posts : 169
   Posted 9/4/2008 6:42 PM (GMT -7)   
Welcome to the fibro forum. I'm sorry you are in so much pain. Perhaps reading some of the posts here will give you some good ideas. This is a very nice bunch. Always here to lend a helping hand.
I just had my 4th in October at 44! I was dx. with fibro in June of this year. I am still in shock!

I am a mother to 4 children; James 11 mo.'s, Davey 2 1/2 yrs,
Dana 4 1/2yrs, and Anne 9 yrs.  I am currently studying to become a natural childbirth educator.... and just trying to figure out where my priorities are right now.

New Member

Date Joined Sep 2008
Total Posts : 5
   Posted 9/6/2008 5:09 AM (GMT -7)   

Good Day,

Just wanted to say thank you to all that replyed to my post - all the information I have received has been more than helpful - and it sort of takes the edge off till I can get to my doctor on tuesday.

Yesterday I thought maybe what ever was in me had disappeared... I almost felt better - I thought too soon. My fingers and feet started to swell and get itchy - this time tho no blisters on hands and feet like before. And of course I did get a small rash on my elbows and knees - not sure what thats all about.

This morning i wake up stiff as a board, rolled out of bed, to find that my face and neck are flushed - my head is POUNDING and my right arm feels so heavy and dead as well my fingers are stiff and swollen...seems like something new each day.

Well enough about me, how is everyone else doing???? Take care to all and god bless!!!!


Veteran Member

Date Joined Jun 2008
Total Posts : 844
   Posted 9/6/2008 7:25 AM (GMT -7)   
Hello Chevyrane and welcome.  I just read your post this morning.  I hope you find another dr. that can help you more with your pain.
I have some of your symptoms but they are nothing compared to yours.  My exhaustion is worse than pain and at first I thought it was due to getting older, but I found out that I had Fibro and that explained so much.
Hope to hear from you some more.  This is a wonderful place to come to for sharing and caring. 
God Bless!
Of all the things that I have lost, I miss my mind the most!!!!

Veteran Member

Date Joined Apr 2004
Total Posts : 6056
   Posted 9/6/2008 8:31 AM (GMT -7)   
Might I suggest that you keep a pain/symptom journal of what's going on with your body so you can refer to it at your next doctor visit. Some of what you are experiencing is puzzling and a good diagnosician will be able to put the pieces together after some tests and poking. You have to be sure to give him/her the whole set of clues, though.

In the mean time you might want to eliminate all the laundry additives (softener, etc.) and stick with plain, unscented laundry detergent with an extra rinse. Costco makes a good one that has even less additives than Dreft for babies. You may want to switch to baby shampoo, too. Sometimes when we start to have problems with dermatitis & rashes in one place another product will trigger it elsewhere as well.

If you nursed your baby that could contribute to the pinched nerve, along with picking him up all the time and holding him on your hip. Much of the bad back & shoulder pain we have comes from our bad body mechanics and posture (and I'm just as guilty as the next person!) when caring for children. To make it worse, we do the same bad lifting day after day and after repeated abuse to our spines, we all of a sudden are in horrible pain. DUH!

I use flexibility yoga to help with my pinched nerve in my left arm. It's really helped. You can try it yourself. It's easy, free and no weird poses or strange postures, just movement on the living room floor. I learned it from a Mich State professor at a local hospital and it's amazing how much pain relief I can get from it.

Flexibility Yoga

Hope this helps.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross

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