Waiting on a diagnosis

Im 25 years old and have never been in so much pain before. Pain thats only getting worse as the months go on. My issues started back in the summer of 2003 when i was diagnosed with raynauds syndrome and chronic tension headaches. I was seeing a chiropractor 3x a week for almost a year to help with my back/neck pain and headaches. Throughout high school and in my late teens to early 20's my pain would come and go but I just always complained that "i just didnt feel normal". In addition to that ive always had a very sensitive stomach.

So fast forward to november 2012 (9 years later). I was having severe abdominal pain that would last for a few weeks than go away and than return out of nowhere, intercourse is very uncomfortable and painful at times, I also get anal spasms that are extremely painful, constant foggy brain and forgetfullness, diarrhea 5-10x a day (been having this issue for years), chronic headaches, muscle pain all over, sensitive feet, problems sleeping through the night and falling asleep and i was 5 months late for my period (went off birth control in june 2012 because my body couldnt handle being on it anymore after so many years on it) so i went to the doctor. (i felt like i was dying i was in so much pain). Little did i know what i was in for... My family doctor thought it could be my gallbladder so she ordered blood, urine, and fecal tests. Everything came back normal except my blood tests showed that i had high testosterone. So she ordered trans-vaginal and abdominal ultrasounds. They found out that i have polycystic ovarian syndrome. (which explained my lack of periods, weight gain, and some other symptoms i was experiencing) However, i was still having abdominal pain and was always fatigued and just didnt feel right. From there i went to a gynecologist who confirmed again i have PCOS but said it shouldnt be causing the pain that i was experiencing. From there i saw a GI specialist and had a colonoscopy and upper endoscopy done which came back normal. I than had more blood tests ran and those came back normal. Two months went by and Id have my good days and bad days but i was not improving, i just felt worse in general. So i went back to the gynecologist and she did a diagnostic laparoscopy to check for endometriosis. Surprise.. that procedure came back normal too. At this point she told me there was nothing else she could do for me and made me and my husband feel like i was making all of this up. So i switched doctors and started seeing a reproductive endocrinologist. She recommended i see a urologist as well because sometimes things can go hand in hand. I had a cystoscopy done which came back normal, hysteroscopy which was normal and a partial D&C. A few days after my hysteroscopy and partial D&C my abdominal pain was so severe and radiating to my back that my husband took me to the ER. I couldnt even walk into the hospital. Another transvaginal ultrasound and Ct scan showed nothing so i was sent home with no answers. I am now seeing a pelvic floor therapist and a pain management doctor who ordered for an mri of my lower lumbar and thoracic back (will find out results Oct 31). They have me on neurontin 100mg 3x day and Baclofen as needed for neck and headache pain. The medicines seem to be making me worse and causing even more joint and muscle pain/spasms. The pain management doctor and therapist recommend i get a tens unit and a professional weighted heating pad for home therapy. Those seem to help me more than anything at the moment. But I have missed so much work and am now on a leave of absence from my job. I am a hairstylist and physically unable to do my job anymore. Even everyday tasks are extremely hard for me to accomplish. I feel so lost and confused that no doctor can figure out whats wrong with me.

Is there any one else out there that is experiencing similar symptoms? Today my therapist called to check in and said that she thinks i may have fibromyalgia since all my other test are coming back normal. I just cant keep living like this as its affecting my marriage, work, and every aspect of my life and well being.

Post Edited (hmelhorn) : 10/14/2013 9:05:59 PM (GMT-6)

Hi Hmelhorn,

Welcome.  I'm sorry you're going through all this...of course it's getting to you.  YOU know how bad you feel, but no one can see anything or measure anything, so they assume you're - who knows - trying to get attention?  Trying to get out of doing anything?  It hurts to be treated this way...but you have found a good place with this forum.  We all understand!

It doesn't happen now as often as it did when I was diagnosed, but amazingly enough, there are still docs who think it's all in our heads. Of course, you may have something other than Fibro, or it may be a combination of that and other thing/s that's causing your extreme pain.  Doing lots of bloodwork is what they have to do to rule out some of them...and even though it's frustrating because you want answers, it's good that it all came back normal.

Take a look at our first thread, "Fibro 101."  There are many links there, one to a long list of possible symptoms (and I don't believe anyone has every one), another where doctors explain what they think is going on with us, ways to help yourself naturally, treatments, including meds and supplements, help in explaining Fibro to others, and a whole lot more...(the fog you mentioned is keeping me from remembering what they are right now!  It's my constant companion.) 

Fibro is not a death sentence, but it is a life sentence.  The knowledge that there's currently no cure is pretty daunting at first, and you will probably go through a grieving process, wanting your old life back.  I was about 5 years older than you when I started really being affected by Fibro, and it was very hard...I had a toddler and another one on the way, and couldn't figure out why I felt 40 years older than my friends. 

The goal of Fibro treatment is to get the pain down to a dull roar, so you can enjoy your life again.  You just have to find a combination of things that works for you, and it's different for every person - which makes it challenging, to say the least!  For instance, a lot of us, like you, have digestive problems of one sort or another, but we don't all do well with the same diet.  Some feel better with an all-natural approach, and some (like me) depend on medications. 

One thing I believe holds true across the board is: movement is good.  I won't say "exercise," because we can't all do that.  But staying in any position too long will definitely increase your pain....make you stiff as a board.  Gentle movement is helpful...walking, water therapy (right now I just walk back and forth), Yoga, stretching - all these are good.  Some people can work up to more exerting forms of exercise....we have one member who is biking and hiking a lot these days.  She worked up to this gradually.

You have to have a doctor (or doctors) who you trust, who take the time to really listen to you.  Sometimes it takes a long while to find them.  It's best to ask right upfront, before you even see them, whether they believe in Fibromyalgia  - otherwise, you're wasting your time.  The best ones are Board certified...Healthgrades.com is a good resource for comparing.

I hope you'll post again - we really are here to help you!  Don't despair.  You really can feel better.

Debbie  

Welcome hmelhorn to the forum! Wow, you have been through so much lately. Your description sure has many of fibro characteristics. Have you seen a rheumatologist before? If you haven't make sure they are board certified. It would be good to go to one, so they can rule out any other auto immune problems. So many fibro symptoms are very close to other auto immune diagnoses.

I am glad you are working with pain management. It usually takes time to find the right treatment for fibro. Try not to get discourage, just keep trying new things. The magnesium that most of us take works really well for muscle cramps. I was amazed how the vitamin supplements work so well for fibro.

I wanted to let you know that I came here on my death bed with fibro. I happen to land on this forum looking for desperate help. I started to read post daily and got some great support from this forum. They taught me how to manage my fibro. It took trial and error methods, but I finally got there. I am doing well with fairly good control of my pain and fatigue. So I wanted to tell you this so you don't give up.

My fibro treatment is kind of simple. I have tried several meds and treatments in the past. As you might find out most fibromites are very sensitive to meds. We can get some ugly side effects. I do the following
Heat, limit stress, light exercise, calcium, magnesium, vitamin D, remron and subutex for pain. If you can limit your daily stress, your fibro will be much more manageable.

Please let us know how you are doing. Feel free to ask questions. We all learn from each other. You should buy a book on fibro. You might be amazed how much your symptoms are so like fibro. Educating yourself in this will really help your treatment.

Post Edited (ak angel) : 10/15/2013 12:55:03 AM (GMT-6)