Fibromyalgia Community
I know the end is near.
About This Community:

This patient support community is for discussions relating to fibromyalgia and related pain management.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

I know the end is near.

Hi, all

First post on here.
Just wanted to share my experience with a disease/disorder which at this stage I feel will ultimately be fatal.
If nothing else I hope my experience will help someone else in the quest for a "cure" or at least a real diagnosis.

In the summer of 2000 I was a normal healthy 24 year old male with no previous health issues at all other than typical childhood illnesses and phneumonia.  One morning I woke with abdominal cramps and what I would describe as a tingling sensation deep in my gut.  An hour or so later I almost passed out due to the severe cramping pains.  I went to a surgeon that could see me, as I suspected something serious.  While the pains had subsisded to some extent I didn't feel right.  Surgeon drew blood and took X rays. All came back normal and the doctor put me on Flagyl.  Never did feel quite right while on the medication and when the meds were finished I had what I would call a withdrawl (withdrawal) reaction.  Extreme excess saliva production, tooth pain, metalic taste, dissyness, etc.
No additional digestive issues, and after a day these symptoms went away.  Mild odd crampy abdominal pains continued.  Approx. two weeks later nausea became overwhelming to the point where I could eat very little.  A few days later the vomiting started and diarrhea followed.  Went to doctor who refered me to a gastroenterologist.  I became unable to keep solid foods of any kind in and at times could not keep water in.
Gastro ordered a number of labs, and upper/lower gi tests.  All came back negative. Dr. put me on Librax as a short term measure.  Librax was effective at calming the digestive system, but as the days went on I started producing more and more acid.  The acid it seemed was making me sick.  Next they added Prilosec and tried a number of other drugs similar to librax because they didnt want me taking lib long term.  None of the other drugs (Levsin, bentyl, etc were effective) so they decided to put me on Lybrax long term.  This was a very long several months of constant sickness.  At one point I had lost 20% body weight from being so sick.  the prilosec librax therapy became a normal and long term means of treatment.  For approx. 4 years I would occasionally get very sick them get back to some state of normal.  I always experienced a low grade fever for the first couple of years.  Doctors said they didn't know what caused these issues, and they classified it as IBS.
Over the years the symptoms got better and the unexplained fever slowly went away. To take it's place came sinus and tonsil problems with a constant sore throat.  Also tongue became fuzzy and light colored.
Around 2005 my back started tingling occasionally.  Doctors were not sure what to make of this. Gall bladder test were done which showed no issues.  Around this time I found that I could reduce the amount of Librax and not become sick.  Prilosec was a must have in order to keep from being nauseated/sick, but I eventually eliminated the Librax.  
As time went on my hands started to shake or tremor at times.  And slowly my digestive symptoms changed to constipation / bloating which non of the treatments my gastro recomended did anything for.  i started drinking mineral oil which was somewhat effective.  
Lower and mid abdominal pains continued on and in 2008 I had a colonoscopy which showed nothing new and no abnormalities.
I had my tonsils removed due to recomendation from my ENT.  they were always irritated and were suspected as part of the problem with swollen lymph nodes, etc.
I no longer had the tonsil issues but problems with sore throat, sinuses and swollen lymph nodes continued.  Docs were no too concerned about the size and location of the nodes.
Early 2009 I started having pain in my left knee for no apparent reason.  It would come and go, and the docs didn't see any reason for concern initially.  The pain spread to include the other knee as well as my shoulders and some of the joints in my fingers.  PCP sent me to a Rheumatologist who said that I needed Neorological and orthopedic tests to rule out structural issues, or MS, parkinsons, etc...
Orho did xrays and didnt see anything abnormal in any of my joints. Neuro did brain MRI which came back negative although they did say that there was "scarring"  I was asked if I had had a head trauma at any point which I had not.
Insomnia seemed to come along with all this and it got to the point that I could not sleep at all. also started experiencing black lines under various finger nails. Went back to rheumatologist who seemed determined that it could not be any kind of rhreumatoid issue.  Depression was suggested as an explanation.  Tried a number of antidepressants which were not effective.  I went to another rheumatologist who seemed to think the same thing or Fibromyalgia.  Lyrica did nothing, doc then tried Flexeril which helped a great deal with sleep.  A variety of odd pains come and go at times chest pains head pains, tingling in back, veins, etc.
Went o yet another Rheumatologist who also suspected depression or fibro or that I was someone looking for a gov check.  I tried several meds which had no possitive effect at all.  Also I had no reason to be depressed as everything in my life except my health was good.
Along with all these issues I had beed experiencing a lot of sexual problems as well as testicle pain.  Urologist diagnosed the pain as a varicocele.  
Along with the varicocele came a number of suddenly visible veins in various parts of my body.  When I brought the vascualar symptoms to my docs attn. I was accused as being on drugs or having some pshchological issues.  The docs dont' wake up to see my body everyday and told me that they saw nothing abnormal.  yet the change was sudden and very noticable to me as well as friends and parents.  The number of visible veins has doubled or tripled in my arms, chest, abdomen, lover legs, and feet.  Docs still dismissed this as simply not possible and that I simply had very promenent veins
One morning just a couple of months ago I woke to find a maze of spider veins on my penis which were not there the day before.  I decided to go to the Mayo Clinic in FL and see one of their docs.  Doc did state that my symptoms were not typical of fibro and he was very familiar with some of my bizzare  symptoms such as the burning tongue which is present at times.  He as others also discounted the vascualar issues as well as what I can see as minor swelling below the kneecaps.  His working diagnosis was central sensitization.  He did want to perform a number of test including a pelvic CT, but I could not practiaclly afford the tests with all Mayo charges being out of pocket due to my insurance.  
Not knowing what else to do, I went back to my urologist a few weeks ago.  No one seems to know what really causes these issues so all I know to do is go after what I can see with my own eyes.  The distended veins are very real and at this stage I can see them in the palm of my hands (a lot) when they are cold or hot.
My urologist was very concerned about the veins and the fact that I have a varicocele in both testicles.  he said that this is not normal and indicates something serious.  he sceduled me to see a thoracic surgeon and thats where I'm at at this stage.  I now take Tramadol for the various pains as well as Flexeril which is somewhat helpful for sleep.
I've gort a bad feeling that whatever tests they do will come back negative as everything else has.  This disease or whatever it can be called has been very progressive for me.  At this point I really dont expect a good outcome, and I'm as prepared as one can be for death.  It's frustrating to know that I may never know what is really killing me.
Related Discussions
26 Comments Post a Comment
Blank
773755_tn?1328123377
totally frustrating and painful with no real diagnosis! thougt they would be able to find something at least...?
can't really encourage you either way - live or die - we're in this situation where we're not dead but we're not really alive either. sometimes we would rather be dead - for sure!
i have never been able to tell when the end would be - a day, a week, five years - it sometimes felt like i would be done in a day, or i would still be here for my 95th year still miserable. anyway, it's largely regrettable, it's out of our hands, i sense you have some
peace with the prospect of dying, i guess i got a lot of relief when i let go of some of the need to know everything, about the disease, when it would improve, what if i didn't, etc etc, i just knew that i didn't know, and would have to go with it. this would sound strange to a well person, but it's a good thing that you haven't put lots of hope and expectation into your next batch of tests - it's not the be-all and end-all of your journey, a lot of the healing is in the acceptance of the big picture of the processes of the disease(s).

best wishes

incidentally it sounds like some sort of industrial poisoning to me, at a glance
Blank
Avatar_f_tn
Yes, at this stage I just want the pain and odd symptoms to be gone.  I've wondered the same thing about poisioning, or something really out there.  All of this started about 2 months after I had a tooth filled with a rather large filling.  Have read that there is some evidence to support that dental work can cause issues (mercury poisoning)  But from what I hear there is no way to test for this or doctors dont want to test because its "grasping at straws". I think if I could just get someone to listen instead of blaming it on depression or fibro, etc that this just might be treatable.  At this stage though I dont know that it would do any good.  It could be that so much internal damage is done that there is no way to reverse things.  
A while back another member (shells17) posted similar symptoms (veins) as mine and I cant help but wonder if this is really some new disease that they simply dont know how to deal with yet.  
I find it intertesting that they ran tv comercials for Zelnorm during the same time I was dealing with digestive issues, and in recent times they run ads for RA and fibromyalgia drugs.  It's almost as if this stuff is following some sort of time line.  
Maybe it means nothing.  All I do know is that none of the autoimmune disorders list anything to do with vein failure yet here I have it.  
The fact that there are others out there with vein symptoms who have been diagnosed with fibro raises some questions
Blank
Avatar_f_tn
The muscle pain, insomnia, depression, etc. could be a magnesium deficiency.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2146789/pdf/canfamphys00077-0094.pdf

Some of the safer and more effective forms of magnesium include: Taurate, Glycinate, and Citrate (latter can be laxitative, so take with food).

I suggest you also look online for a highly absorbable, high dose, high nutrient, multi-mineral & multi-vitamin, supplement.  Something with many good testimonial reviews.
Blank
Avatar_f_tn
Humm worth looking into I guess.  Just wish the list of possibles were not so long, and I wish there were tests to confirm or rule out.  The next step is getting a doctor to go along with it.
Blank
Avatar_f_tn
I've yet to meet a doctor with a problem with taking a multi-vitamin and the same with magnesium.
Blank
Avatar_n_tn
I had similar problems and could not figure it out and it ended up being Lyme Disease.  Please get tested for Lyme by a Lyme Literate MD.
Blank
Avatar_f_tn
My labcorp test for lyme came back negative.  They did a Lyme Ab, western blot reflex IgG IgM Ab although they didn't actually put the value on the test report.
The result was listed at <0.91
To me that doesn't mean a whole lot.  It could have been 0.01 , 0.90 or anywhere in between.
I've asked all of the doctors about this and they all dismiss Lyme as even possible.  My PCP told me that no one anywhere around has Lyme.  Mayo doc said the same.  The Lyme concern remains on my mind, just as every other possible that no one will test for or has a way to test for. Very frustrating.
After much reading about LLMD's I tried to find one through Ilads. No luck.  Any in the list within 200 miles of me wouldn't call me back or told me they didn't have a office.
Got the Igenex test kit several weeks ago, but haven't done anything with it.  I think I could talk my doc into drawing the blood and signing the form but from what I read the test is basically the same as what labcorp did.
On top of that many seem to think the Lyme tests are accurate.  If thats the case how can doctors go by them?  Sort of like those that go by the ANA results.  My dermatologist told me that the skin problems I was having were seborheia.  "if your ANA is negative you CAN NOT have lupus"  his words...  yet I read that ANA tests are not 100% accurate.
What a fiasco.
I guess if it comes down to it I could obtain some keflex and amoxicillin from outside the normal medical routes and tank up on them.  Legal or not it's not like I have a lot to loose.

I looked back over my lab report and my Magnesium, Serum level was 2.4 mg/dl   range was listed at 1.6 - 2.6  Dont know if that really means anything though..
Blank
Avatar_m_tn
How frustrating. I am sorry. As far as your magnesium level goes, that just means that "normal" range is 1.6 to 2.6. If yours was 2.4 then it is within the normal range.

I also have concerns about Lyme disease.
Blank
Avatar_f_tn
You havnt been exposed to malaria or anything like that have u? Have u tried holistic care from a foot zoner or iridologist? I'm so sorry ur having undiagnosed serious illnesses!!!!
Blank
Avatar_f_tn
Honestly I dont know what all I've been exposed to in my life time.  I've done various jobs from roofing and mechanic work, to drafting and my current engineering position.  I've had hobbies that put me neck deep in swamps, ponds, rivers, lakes, the wooded country, etc..  So who knows.
Not familiar with the above.
I wish there was a doctor I could just go to and say; "test me for every disease or condition ever known to exist".
In recent time I've tried to get someone to take a needle and withdraw some of the fluid from the "puffy" tissue below my knee and at least look at it or do some sort of analaysis on it. To me swelling means something.  
Blank
Avatar_f_tn
Look around ur area for a foot zoner (heals through the foot and there's much to learn through a foot zone about onesself) and iridologist (heals through what the eyes tell). Wouldn't hurt. I use both to remain balanced as a whole and healthy
Blank
Avatar_f_tn
Look around ur area for a foot zoner (heals through the foot and there's much to learn through a foot zone about onesself) and iridologist (heals through what the eyes tell). Wouldn't hurt. I use both to remain balanced as a whole and healthy
Blank
Avatar_f_tn
I would have that filling removed & replaced. Find a Naturalpathic doctor that specializes in heavy metal poisioning. You've become so sick it will take a long time to get better, but you will have a better quality of life. Where are you locayed?
Blank
Avatar_f_tn
I'm in Vidalia, Georgia
From what I've read about fillings, there isn't a way to test and see if that's the issue.  I'd hate to have a tooth pulled with out knowing for a fact that it is the cause.  It's hard to imagine that something as simple as a filling could cause issues like this.  This is another one of those things that falls in a "voodoo" or "witchcraft" type catagory for most doctors it seems.  (sorry dont know of a better term)
It would be great if it could be proven though.  What would have been better is have never had it done in the first place.  That raises another question.  Why would the ADA allow mercury fillings if no one could prove whether or not they could cause a health issue?  
Blank
Avatar_f_tn
Terri that's a very good question!! I personally believe mercury to be a toxic metal and was not intended for human consumption OR to be implanted in a human in any way.
Blank
Avatar_f_tn
extracting the tooth sounds extreme... is it possible to have the filling removed and replaced?
Blank
Avatar_n_tn
I can't help you with the pain or veins or anything except the stomache issues and helping your immune system...Try a probiotic called TUZEN, you can go to their website and get a free 30 day trial. It will help balance your stomache flora and make that area a bit better and boost your immune system. When your immune system gets a boost it usually helps other areas...not a cure by any means but help for the stomache areas.
Do you eat or drink a lot of stuff with aspartame?
Blank
Avatar_f_tn
My regular dentist basically said no way in regards to removing the filling.  I guess because of the issues of grinding dust particles.   I understand that there are some that specialize in this though.  Don't have all the details on that yet.
May have to give the Tuzen a try.  I tried a few different probiotics and some were effective.
No aspartame.  Over the years I have cut out various things that could be suspected.  Caffeine, sugar, gluten, milk, etc..  I even went so far as to cut out all liquids except distilled water for an entire year.
The only for sure thing I discovered from all that was that I needed to stay away from the caffeine.  
I go back to my primary doctor Thursday.   Surgeon I went to only wanted to close up the veins in my legs.  He didn't have any recommendations for all the other vascular issues.
I think I'm going to at least get the abdominal and pelvic CT done whether ins. pays for it or not.  Mayo doc wanted to do that for some reason.  From what I've read an MRI would generally provide better images, with the exception of certain soft tissues.  
We will see.
Another thought is to have a biopsy done on a lump inside my mouth.  It's BB sized and came up last September.  It hurt initially (came up overnight) and the pain went away over the next few days.  Everyone has tried to reasure me that it's noting to be concerned about, explaining that it's just a salivary gland or something.
Like most everything else, whatever I have done will be most or all out of pocket procedures.  I just have to figure out how much money to throw at this and in what order.
Blank
Avatar_n_tn
Have you tried plaquenil? Also since you have been in swamps etc you might try seeing a doctor who sees people that travel to 3rd world countries etc. This is a specialized area. You might actually have a parasite of some sort. I have seen that before on mystery diagnosis. A regular doctor probably might not catch something like that-leptospirosis, lungworm, there are lots of intestinal parasites and they are not always caught by regular stool sample or colonoscopy. In USA you don't see them so much so doctors don't look for them.The doctor has to know about parasites to diagnose them. You can have them for many years before you get diagnosed. In India, many live a lifetime with them in their bodies. It's a long shot but maybe worth a try. These docs are usually in large cities. Also, what about another tick born disease like more common ones-Rocky Mountain, etc.
Blank
1456948_tn?1285467972
Mercury levels can be tested.  I thought I had a problem with it so I ordered the test myself.  You can do that through http://www.healthonelabs.com/ and pay for it yourself.  They do other tests too.  You go to LabCorp after you pay online, the tests are cheaper that way and if anyone is a self pay, this is the way to do it.  Whenever my doctors don't want to run tests, particularly if they think insurance won't pay, I do it this way, then take the results to them if it isn't obvious what the results are.

I'm not doing too well cognitively right now so if you mentioned this, I apologize.  If you haven't seen a naturopath or homeopath I would see one.  Alternative medicine is getting more and more recognition.  One of my doctors has Harvard and Yale degrees and she does the alternative medicine stuff with me.  Most medical schools now are setting up alternative medicine clinics.

By the way, not any dentist can remove teeth with mercury?  You have to go to a bioengineering dentist certified in mercury removal or you will be releasing more mercury into your system.
Blank
Avatar_f_tn
Haven't been on Plaquinil.  Doctors have been reluctant to prescribe much of anything beyond the typical antidepressants, and Tramadol for pain.  Didn't realize parasites were so difficult to diagnose.  Thought endoscopy was a sure way to find those.
Thanks for the info.
There is an alternative med clinic within driving distance.  I'm going to make an appointment with them and see what they have to say.
Blank
Avatar_f_tn
Just a little update.
Had a odd rash come up the other day.  It seems typical of Pityriasis rosea. Doc did a biopsy to see because he suspects some other cause.  Biopsy came back as an allergic dermatitis condition.  Stoped taking all meds except zantac which is a must.  Somehow I doubt that flexerile or tramadol could be causing a reaction.  And the zantac I've been on for over a year..  The rash continues to spread and going without the pain meds is quite challenging especially in the sleep dept.  Also seem to be feeling hotter than normal especially after meals yet temp readings are norm. we will see.
Blank
Avatar_m_tn
I was in your situation.Homeopathic doctors may help you but western medicine doctors wont.I found a curezone and did a total body detox and it helped a lot
Blank
Avatar_m_tn
curezone helped me figure out the prblem,no doctor will
Blank
Avatar_f_tn
where is curezone ?
Blank
Avatar_f_tn
Did your results come out.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Fibromyalgia Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
Top Autoimmune Answerers
1530171_tn?1362547225
Blank
TheLightSeeker
London, ON
434278_tn?1324709825
Blank
karajo
Spearsville, LA
1340994_tn?1374197577
Blank
Caryopteris
Raleigh, NC