Posted 6/27/2008 5:15 AM (GMT -6)
Thanks for your kind reply hippimom and thanks to Judilyn who corrected my first post.
I am currently waiting for my complete hormone overview test results to come back, this had my testosterone, eostrogen, dhea, dheas, tested with a 24 hour cortisol test aswell as a full thyroid picture. Should be here any day now and I feel is my last hope to get some conclusive answers as to whats going on inside. The thing that makes me livid is that I have been pushing for this test for two years with my doctors and for some reson they are so reluctant to do it mad I have no idea what their problem is but you would think if someone came into your surgery feeling as we feel would you not offer them any help you could to rectify the situation?? Its as if they are paying out of their own pocket, UNBELIEVABLE!!
Anyway i've had to pay £300 for this test, told my doctor and they've got the cheek to say bring the results back in and we'll have a look, what a joke. I am 100% certain, as you are hippimom, that my bouts of tension anxiety and occasional waves of feeling pretty low are dowm to the fact that you just cant do what you used to do and because enjoyment(I mean the times when you are fully concentrated on doing something exciting and fun, without that niggling i'm not well feeling) just seems out of reach most of the time. This is NOT down to depression or anxiety, they are just offshoots of a bigger underlying problem which i'm sure CAN AND WILL be fixed!!
I regret to say that as this bad time for me has slowly progressed I have deveoped a sort of hatred for alot of types of people and professionals. I know this is by no means the best way of being but I am an extremely angry, prickly young man at the lack of understanding and empathy for the ones of us who drop out of the "normal way" of living for these periods in our lives and is one of the reasons, along with the fact that it makes me feel like crap, that I stopped going out and drinking beer as all of my pent up aggression and hatred would usually be released in the pub enviroment, not good nono .
One thing I have learned to do, as should anyone else in these situations, is give yourself credit for ANYTHING you manage to do no matter how small, because when your like this even getting out of bed can be a massive effort, so make sure you tell tourself WELL DONE! I have made massive leaps and bound in the 9 months that this has been just about unbearable( although the undercurrent of "there's something really not right here" has been a good few years) and if you really think about it, we have all been being doctors, doing the jobs of ignorant proffesionals, researching in our spare time, probably pushing ourselves through our jobs aswell, trying to keep social lives intact whilst on and off crippling zombie'ing needless medications, trying to exercise and keep in shape, trying to keep family onside proving that you do like them and your not just lazy, all of modern lifes financial worries and all of this while you feel like you are about to drop off the face of the earth!!
Anyone reading this having simalar problems just read paragraph again and realise, that although you may feel the weakest you have ever felt in your life, LOOK AT HOW UNBELIEVABLY STRONG YOU REALLY ARE devil and when you get through this, you will be a force to be reckoned with, queitly, contentedly, powerful, happy to watch the others flee around in the rat race and while yes you'll still have your responsibilities they will now seem a piece of cake compared to what you have encountered and conquered as your knew outlook on life will be a refreshing one.
Now I just need my test results and I will begin my journey to not just recovery but to surpassing what I did before and feel better doing it, I hope people can take inspiration from me and do the same, no doubt it is excruciatingly hard at times but it can and will be done, remember that.
Posted 6/27/2008 2:21 PM (GMT -6)

Hello,

First, i am sorry to hear your in such pain. Couple of months ago i started having trouble breathing walking up a flight of  stair, i have severe muscle pain, weakness, overall crappy. about 4 months ago i was biten by a bug, so now i am wondering if it could be lyme? Have you ever been tested for that or thyroid. I am trying to get tested for that next:)

Posted 6/27/2008 3:07 PM (GMT -6)
Hi everyone,
 
I've been having trouble for years with fatigue.  I had a horrible virus in Middle School, contact with Mono in High School, and was flat out in bed for a month with "mono"? in 2000.  I had a hysterectomy 3 months ago and am told I'm all better (it was internal).
 
I have had chronic pain for the last 8 years - seems to get worse.  I am wondering if possible I may have Chronic Fatigue Syndrome.  I'm always so exhausted - can't wake up early, have to take naps, etc.
 
Does anyone have a suggestion on how to get my doctor to even consider the possibility and run some tests.  I know they can run a test for Epstein Barr virus, but that's just the beginning.
 
Any help would be greatly appreciated - especially by those who have been diagnosed by their doctor.
 
Thank you!
 
Lisa
Lisa aka pain

Posted 6/28/2008 10:34 AM (GMT -6)
Hawkeye, please let us know how the test results go. I got a little confused when I read the original post and thought that Judilyn had written it, but now I realize she just fixed it and copied for you - yes, I have the brain fog too. So, just ignore that part I wrote about the UC - I saw in Judilyn's signature about having UC, but I it doesn't look like that applies to you.

I don't blame you for your dislike of most of the medical profession. A lot of us with chronic illnesses can relate to that feeling of not being listened to and being brushed off. Fortunately after a long search I have finally found a good specialist and a good primary doctor.
 
Lisa, I wanted to welcome you and say that your situation sounds similar to mine.  I had a really bad case of mono my senior year in high school and I was never the same again.  Your doc should run a lot of tests to make sure that you don't have anything else going on before giving you a CFS diagnosis.  Let me know if you have any questions.


Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


Post Edited (hippimom2) : 6/28/2008 9:37:18 AM (GMT-6)

Posted 7/1/2008 2:52 PM (GMT -6)
Hi all, just got my tests through the post and I was right!!
my cortisol levels are up and down like a rollercoaster which is more than likely affecting my throid function(although they were within range) and my testosterone levels are "low normal".
Here's the main results:
 
Cortisol morning: 11.6 (3.7-9.5) very high
Cortisol noon    : 2.0 (1.2-3.0) perfect
Cortisol evening: 3.1 (0.6-1.9) very high
Cortisol night    : 0.3 (0.4-1.0) low
 
Testosterone    : 89 (44-148) fairly low
 
They wrote, " It is clear from your evaluation that you have one main problem area with another that needs some attention and these are your adrenal function and your sex hormone balance.
From a sex hormone point of view your situation is not too bad bud could do with gentle support and this will have a positive impact on a lot of the symptoms you are experiencing.
From an adrenal function perspective it seems that your evaluation has shown that you are showing solid signs of adrenal stress and symptom reporting is indicative of a level of stress that needs attention.
Your thyroid function indicates that you are in good range but your suspect adrenal function may well be having an impact on the way your thyroid hormones are functioning."
 
This is good news in a way and makes me feel quite alot better, but I have been pushing for these tests for over a year now with doctors and they have fobbed me off every time while I feel so sh**ty!
I will be making an appointment tommorow morning and going in armed with these result to see what they are going to do. I have not decided which route to go next but we'll see.
 
Thanks for the kind words from all who have posted you are no doubt great inspiration and support for anyone in these terrible situations and hopefully after not giving in an pushing so hard for a couple of years, I have achieved the greatest goal in a tiny amount of time the path to recovery and progression, thanks again.
Posted 8/1/2008 8:46 AM (GMT -6)
Hello,

I came across this thread as I'm looking to use Bio Vitality also.

Hawkeye how has everything gone since you got the results? What was your doctor's reaction?

I'm also in the UK but am from Australia. I seem to suffer from recurring bouts of intense fatigue and other symptoms
following a respiratory infection - I'm usually knocked out for at least a month or two. This is the fourth time in two years
and each time it happens I am really frightened for my health. I have never been diagnosed with anything which is why
I'm now going to get some more involved testing done. Of course have had the standard blood tests which never show up
anything too out of the ordinary.

I've decided that if I don't recover or feel better within a month then I will have to go home to Australia as the UK is so expensive
and I can't get any of my alternate treatments covered on insurance or get unemployment benefits.

thanks
Allison
Posted 8/4/2008 4:06 PM (GMT -6)
Hawkeye, it really sounds to me like you have a lot of the symptoms of fibromyalgia, especially the body aches and pains and the fatigue.  You should get Mary Shomon's books "Living Well With Chronic Fatigue and Fibromyalgia," and "Living Well With Hypothyroidism."
 
You say you had bloodwork done to check your thyroid and results show no problem, but are you sure that bloodwork included looking at not only your TSH but also your Free T3 and T4, Reverse T3 and the two thyroid antibodies?  If not, then the test was not complete and did not give you an accurate picture of things.  The thyroid antibodies can be totally out of whack when all the other readings are normal. 
 
The reason I ask about your thyroid is that a low functioning thyroid (hypothyroidism) can cause all sorts of symptoms, including yours and including fibromyalgia and Chronic Fatigue.
 
I'm glad your doctors are going to address your adrenal issues, but do make sure they checked your thyroid antibodies.
 
Best wishes!
Chels

Posted 8/5/2008 4:06 PM (GMT -6)
Hi Hawkeye! Sorry.....this is kinda long so please bear with me.

I'm normally roaming around over in the Fibro forum but realized that I've been neglecting the CFS part of my family. Your post caught my eye.....I'm male too and we are very few and far between. I've was dx'd with sleep apnea in March by a sleep study. I was dx'd with Fibro, CFS and CEBV in June. It took seeing a good and trusting rheumatologist for the last 3, especially one who had great knowledge and experience with Fibro and CFS, to deduce these dx's from several specialized blood tests. Fibro and CFS can only be "officially" diagnosed through a process of elimination......elimination of other diseases and conditions which have overlapping or mimicing symptoms and can be identified by definitive tests. No definitive test exists yet that can dx Fibro and CFS positively.

I've been taking meds for many years for daily pain, hypothyroidism, testosterone injections every two weeks, hypertension, cholesterol, heart arrythmia and prozac for depression that is fibro/cfs related. Most of the conditions you mentioned I've had experience with in one form or another so I know exactly where you are coming from on those. What you are experiencing is not only frustrating and confusing for you but also for all those around you. These are virtually invisible conditions, you know, "You don't look sick" types that others can mistake for laziness, hypochondria or just make-believe! If you read the Fibro 101 resources and the chronic fatigue resources links here you will see many aspects of your symptoms being described. Throw in and read this link to a CEBV (Chronic Epstein-Barr Virus) website: http://cebv.org/index.php?option=com_frontpage&Itemid=1 and you'll see many symptoms overlap with fibro and cfs but Epstein-Barr and Chronic Epstein-Barr can be definitively dx'd and should also be considered.

Just the relief of finally being "officially" diagnosed lifted a huge burden from me. Now, there was a definite source of named conditions to treat and many various treatments to try for each (All 3 are incurable but not untreatable or life-threatening). To make a long story short, my rheumy started me on a new, somewhat experimental regimen of glutathione/atp injections that were proven effective in clinical trials for the majority of participants......once a week for six weeks. Then, another rheumy visit 2 weeks ago, more tests to compare against the first and six more weeks of injections.

The verdict so far......I've felt better than I have in many years! More energy, substantially less pain and fatigue and substantially less "brain fog". The test results showed marked improvement in CEBV specific tests and also in all the other tests that showed out-of-range numbers the first time around. I truly believe the injections are helping me and we'll see if things improve further when the next tests are run in late August.

I don't know if this can help you but there are many other treatments to be tried if not. So hang in there Hawkeye.......a journey of a thousand miles begins with but a single step!! Best wishes and best o' luck to you as well!!!!

John

P.S. By the way, you mention drinking alcohol.......none of these conditions and associated meds are very alcohol tolerant so it may mean severly restricting or quitting altogether. Even 1 or 2 beers makes me feel crappy!!!!


*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!

Post Edited (jev) : 8/5/2008 3:14:22 PM (GMT-6)

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