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A PAINFUL JOURNEY

Oct 24, 2007 - 8 comments
Tags:

Chronic Pain

,

Multiple symptoms

,

I need suggestions!

,

Fibromyalgia



I've read through my medical records and discovered things that were never told to me from the tests that I've had done.  
Why or how do doctors assume that these things that they never tell are nonessential?
Here's my situation:
I've sufferred from HSV-2 for 22 years, supposed unrelated to everything else you are about to read.
First I experienced periodic severe stabbing pain in my RUQ abdomen and then I displayed chronic alternating diarrhea and constipation with severe abdominal cramping along with the first symptom.
I had every GI test and no diagnosis until two years, two surgeries, numerous doctors and tests later when I finally ended up in the ER and was diagnosed with IBS.
Meds for the IBS didn't help my diarrhea/constipation from alternating, nor prevent the sharp stabbing RUQ abdominal pains which had become more frequent and lasting longer.
I was also diagnosed with 3 herniated cervical, 3 thoracic and 2 lumbar discs, which meds and physical therapy didn't help any of my symptoms.
During this process, I began to have additional symptoms:
dizziness, migranes, tremors, slurred speech, memory problems, comprehension, word recall, difficulty paying attention, heat and cold sensitivity, shocking sensations when tilting my chin down toward my chest, extreme fatigue, difficulty walking, balance, pain shooting down arms and legs, numbness and swelling of hands and feet, facial swelling, stabbing eye pain and floaters, muscle aches-spasms-weakness and morning stiffness, nausea and vomiting, ringing in my ears, severe back, neck and leg pain, bowel and bladder disfunctions, insomnia, weight gain, difficulty breathing while sleeping, lump in my throat, temporary right side paralysis, temporary neck down paralysis.
There have been so many that I have to write each new one down to keep a record of them.
Currently my main symptoms are extreme pain and ache all over especially my back and legs at night, severe swelling of my hands, feet and face and stiffness in the morning, daytime fatigue w/o sleep but night time insomnia due to pain, weakness, hoarse voice, uncontrollable irritability, battling depression, abdominal swelling after eating a small dinner my one and only meal due to pain and yet still gaining weight while on phentermine.
I've had almost every test possible done including thyroid with the exception of an LP which was never performed.
I've been diagnosed with Fibromyalgia and have been taking Lryica, Zanaflex, and Tramadol while being weaned off of Gabapentin and have had no relief of my symptoms yet.
I've seen:
(3 family practice doctors/2 neurosurgeons/2 neurologists/1 orthopedic surgeon/1 Physical Therapist/2 Pain clinics/1 allergist/1 GI/1 General Surgeon/2 Urologist/3 Gynecologists/1 cardiologist)
Had tests done at 5 different hospitals and tests included:
x-rays, ct scans, abdominal and renal ultrasound, MRI's, ekg, emg, evok potential, nerve conduction study, liver function, colonoscopy, endoscopy, upper/lower gi, barium enema, thyroid, sugar, lyme disease, numerous blood tests,  and so many other tests that I can't remember them all and I forgot to write them down, but they checked every organ, my muscles, nerves, bones, blood, skin and they did exploratory surgery,  kidney surgery and two Epidural Steroid Injections which didn't help with the pain, but made it worse.
The pain becomes a little more intense every week, medicine doesn't help and I'm not even comfortable with the Fibro diagnosis.
Do doctors ever really know what they are dealing with when they diagnose people with Fibro?
Does anyone have any other suggestions or questions that could help determine a possible solution or some assistance with the pain, other than Lyme disease information?
I'm scheduled for two more final tests next week.
A Breathing test and a thyroid ultrasound.
I posted this on the undiagnosed symptoms forum already and only received responses from one person.
Please advise anyone you may know that has had similar symptoms to post their solution if any.
I'm also curious if other people are noticing the difficulty out there in getting a prompt or accurate diagnosis, medications that work and if they are also finding information in their medical records that was never disclosed
to them by a doctor.  
Are there new illnesses on the rise that were not being informed about?
Why isn't HSV-2 called an autoimmune disease, can it affect the immune system?
Is HSV-2 the root of all my problems, since it rests in the CNS?
Do my symptoms and test results determine Fibro without an LP done to rule out an autoimmune like MS?
Are there any other possible solutions or tests?

Thank you for taking the time to read about my painful journey and I only hope that someone can shed some light on this and help me determine what's going on.

I've posted this on numerous forums in hopes that someone in one of the areas can help me.
I've also decided to keep this journal to post updates in.
I'm scheduled for my breathing test tomorrow.
I don't feel that this test will serve any purpose, as was a tilt table test I had done.
When I had asked my cardiologist why I had a tilt table test done, he stated to rule out
dehydration for the dizziness.  The funny thing is, we had this conversation prior to the
test and I told him then that I was not dehydrated.  I'd been drinking the same amount of tea
for 20 years and if he thought it was now causing me to be dehydrated for a year without dying,
then that probably isn't what's causing my dizziness.  Needless to say it wasn't and if I had known
that was the only reason for that stupid test, I would have saved myself a load of cash.
I've become very frustrated with doctors over the past 3 years because I've found that most of them are like auto repair shop that rips you off, same approach you know.  All about the money, but not for the outcome.
I'll post back as much as possible to see if anyone has any insights.


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by TeenyBear72, Oct 25, 2007
I don't know if you believe in God or Jesus above but I will just say this did you know Jesus took our strips for our Healing...
Some people don't even understand that Healing is Gift from God..All we have to do is accept it and believe with all of our hearts
that we will be healed. God says if 2 or more agree together that it shall be done..the catch is (You have to keep agreeing with 2 or more people that you will be Healed  and in God's time it will happen.) I have been sick myself and I finally went to a Healing
Service and I want you to know I feel so much better today..I Know it was not any of the meds. and If I start feeling bad again I will keep going to Healing services. I started seizures in April and August had to have ovaries removed and Seizures just came
back in September..God Knows our pain and heartache and he can take it all away..I will be praying for you and I hope I helped you...

Avatar universal
by babydoll306, Oct 25, 2007
AMEN, TeenyBear77

Avatar universal
by siris, Dec 12, 2008
hi,

I completely understand what you are going through, because I am also going through same symptoms and every one feels its not a big disease because its not diagnosed. Nobody can understand this pain. Same constipation, stomach pain, headaches, weakness, dizziness, speech and vision problems , memory problems, legs , hands tightness, stomach tightness, cant concentrate for that matter i dont know what I speak when im in pain and i am in pain all the time. Doctors misdiagnosed and indirectly become the cause of more pain...just because of doctor I am in more pain today I feel. since all reports are normal they think its not big and people treat as they like. though my neck mri showed severe muscle spasms. I stopped seeing doctors as I cant afford it anymore and all the time I am lying on bedbearing pain..Just waiting if GOD helps one day.

So I can understand your situation completely. If you can figure out something i request to share  with me..even if the pain 10-30% down it will be good for us.

Good Luck

Avatar universal
by bbuckeye, Dec 23, 2009
I have been having chest pain/spasms on my right side that now shoot up my throat and into my ear.  It started 10 years ago and at first I thought it was heartburn.  I have been to doctor after doctor after doctor including Cleveland Clinic and Mayo with no real results except to diagnose a thyroid infection that sent my SED rate to 30 that may or may not be related.  I am still on thyroid medication, but the specialist I see does not understand that I am still so very tires and in pain.  I am not going back.  I still experience a LOT of fatigue and general muscle aches.  I have 'spells' of extreme fatigue before the spasm attacks sometimes.  Sometimes I know it is coming, and sometimes it sneaks up on me.  It feeds my depression as well.  I am fortunate in that I have been able to hide my issues with handfuls of ibuprofin and grouching around if it occurs at work.  Thankfully it happens more in the evenings, but that robs my family of a lot of joy and happiness as I twist around on the couch and beg them not to touch me.  It is only getting worse.  The doctors find something little, scare me to death with tests and the expense and time off, only to find that that wasn't the problem, yet they have no explanation for the initial finding that may or may not mean anything.

I understand what you are going through at least to some degree.  It sounds like you have tried valiantly to come up with a solution and have found little to no support in the medical community.  I feel for you.  It is a real struggle.  I am at my wits end with the bills and no solution, but I haven't quite given in yet.  My family physician at least acknowledges me as a real human being with real pain.  There are good ones out there who do get it.  Unfortunately there are still no results for me, either. I have been taking some time off of the doctor circuit to research and prepare myself for another round.  I don't know what to do, either.  I hope it is enough to know you are not alone.  

-B

Avatar universal
by kittycat5789, May 10, 2013
For a Painfull Journey. I'm so sorry that you have suffered. It's not sympathy but empathey. I had all of your symptoms except for the IBS. At the age of 24 my body fell apart. I know what it feels like to be 80, decades before I got there. I did research too. I looked up every illness I could and compred symptoms. Some of the illness that I read about terrified me. I was told that I probably had a neurodenerative disease. Or an automune condition. No one really knew what I had. I had been to many doctors. All they would do was run the same standard tests and prescibe me medications to treat my symptoms. I did not want a bandaid. I wanted a diagnosis. I know you don't want info on lyme disease. Please forgive me, but thats what I was diagnosed with. It took a yr and a half to get my diagnoses. I had been tested earlier when my symptoms had started and the test was negative. I no longer thought of it as a possibility. What I found out on this painful journey of mine is that you can have lyme disease and still test negative. They only test for 3 strands of this bacteria but there are more then 3 strands. There are labs that test specific for lyme, such as Igenix labs. Sometimes diagnosis has to be made off of clinical findings and not pathology. So sick people fall through the cracks. I'm not going to say thats what you have. I'm just saying it sounds a lot like lyme. I can say that today I am 95 percent to being back to my old self. I'm so glad that your not giving up. People have no idea what courage is untill they face what we have. It takes a strenght they can not even imageine. If you decide you want to look more into the possibility of lyme you can go to MdJunction. They have other support pages to that you might find helpfull in finding a diagnosis. It's full of medical information on all kinds of things. You are rignt about the fibro. It is just a symptom of something. I also believe that God heals and that he cares. You are not alone.

Avatar universal
by RaKhadj, May 12, 2013
Hi, I just came across this posting last night when searching for the possible answers behind a debilitating episode I had Friday night that included full body muscle spasms, nerve pain so severe I couldn't have anything touch my skin and deep bone pain that I have never felt before.

I also want to put in my two cents about Lyme Disease and Fibro. I had Lyme in the early 90's at the age of 31. I had been misdiagnosed for 3 years because the symptoms were so all over the map and it wasn't a common enough diagnosis that people were tested for it that often. I finally had one test that came back so strongly positive I was sent to an ID (Infectious Disease) specialist. After 4 years of treatment including I'VE antibiotics, the Lyme was gone.

In its place though came Fibromyalgia. Don't be fooled into thinking that it isn't a real diagnosis. Anyone with current training in Rheumatology and Pain management can and will tell you it is real, as is the pain that accompanies it.

Two months ago my Fibro symptoms began changing and I ended up at a new specialist who ran more tests that I haven't had before. I was just diagnosed with MGUS, an autoimmune blood disorder that has links to many other diseases/disorders.

Please don't give up hope on finding the right people to care for you and find the answer to your problems. Your pain is real, and if that means you have to doc shop till you find the compassion and understanding you need to get answers, then so be it.

Chronic Regional Pain Syndrome is another diagnosis you may want to investigate. Also check out the National Pain Association. They can give you recommendations on practitioners for you to see in your area that are familiar with treating as yet undiagnosed chronic pain.

Keep reminding yourself that "Just because you can't see it, doesn't mean it doesn't exist".  

Good luck to you.

Avatar universal
by 12345girl, Mar 13, 2016
Please did you ever find any answers.  I am now going through exactly all these symptoms. I'm scared

Avatar universal
by 12345girl, Mar 14, 2016
Hello everyone I am truly sorry you are suffering you are not alone.  Did you ever get an answer to what these issues are. I am experiencing all the same pains.  In one day I went from being happy and heathy to sick in one day.

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