Help - trouble getting diagnosis (Copied post)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 6/25/2008 5:48 PM (GMT -6)   
Hi All,
        I have joined this board due to overwhelming problems that I have been having for a good few years now.
I have been going backwards and forwards from my doctors surgery now for about three years to try and cure a "mystery illness" that has been severely affecting my life now for an unacceptable amount of time, and shows no signs of improving, maybe even the opposite. The main symptoms I have all of the time are, extreme chronic fatigue, severe muscle/joint aches, inability to think/concentate even speak sometimes and constant nausea feeling.
When I have been speaking to doctors I have always worked on the basis(stupidly, which I will come to later)that this started around the age of 20(i'm 24 now)when I had an abcess in my tooth, had to wait two weeks to get it seen to, had no sleep, was relying on painkillers to keep going to work and eventually collapsed in exhaustion on the bus on the way to work and was admitted to hospital. Things had never been quite the same since then so I blindly used that as a starting point for my troubles and was diagnosed with anxiety. At this point I was nearly 100% trusting in my doctors diagnosis and began his reccomended course of treatment, Effexor tablets. What a massive mistake, for 6 months I powered through in a zombie like state feeling totally isolated, unable to think, just sleep and this was the first time that I can remember that sickly/dishevelled feeling that stays with me to this day. I hastily stopped them cold turkey(bad mistake with hindsight) and regained some sort of normality in a few months but there was always an underlying feeling of extreme exhaustion and the worst one for me the aches and pains, constantly trying to move my limbs(especially shoulders/neck and chest) to "click" them into place, which never happened along with taking ages to shake colds and intolerance to things like alcohol and junk food.
A few muddled years on in 2006 and under the thinly vieiled impression that I was making progress, amongst the underlying aches, feelings of exhaustion and unrefreshing sleep, I had the misfortune of breaking my ankle and was in hospital for 12 days full of drugs, had an operation to put 7 screws plus a metal plate in my ankle and was incapacitated for 5-6 months being almost totally dependant on other people for the early stages. This made thing much worse as the only breath of fresh air I could 100% rely on at that stage in my life was the gym and football, which even though they worsened the exhaustion and had me sore for days made me feel normal.
The killer blow was just as I was getting back on my feet I was scheduled to go on a party holiday with my girlfriend to Benidorm which, because I was still stubbornly hiding these mass of problems from everyone put a smile and boarded the plane. Big mistake number two and after a nearly a week of trying to drink cheap vodka to feel normal I had no option but to come clean and told her I thought I needed some help. 
I was straight off the plane and into the doctors, where they prescibed me Prozac because it was an "energising SSRI" and I would get multiple benefits. I had a complete aversion to taking these sort of tablets from the first episode but by now was to exhausted to reason against it along with the convincing sales pitch put forward by the doctor and along came mistake number 3. During my year on Prozac I went back to the doctor many times explaining how sick and isolated I felt but was told it was normal and that I should continue. In fact sick and isolated did not even touch the surface but I was still in stubborn, male pride denial stage and due to this all social life and other activities stopped as I was just scraping through work(construction)then sleeping. By now I had wised up and started doing my homework on the internet to see what exactly I was taking and what side effects it had, as I was still blaming myself for the way I felt at this stage and had felt suicidal at one point. I was horrified to read about what I was on and set myself a very slow weaning off program about a year after starting and 8 terrible weeks later I was free from them, but not all of the side effects.
That was August 2007 nearly a year on I have quit a night class I was doing training to be a gas engineer, I barely manage work with alot of time on the sick, am a pretty bad insomniac(I blame the aches/pains), my social life is pretty much non existant, my relationship is strained sometimes even though I am fortunate to have a partner who loves me unconditionally and cannot tolerate many forms of excersise which was my only way out. I had immediatley changed to a much healthier diet during the latter stages of the Prozac and continue that to this day, supplementing with multi vitamins and minerals to no real avail and feel extremely trapped, especially after many more trips to the doctors after changing surgerys and being told I just need sleep and being offered Diazepam countless times.
I have pushed countless times, after being to see holistic/behavior/homeopathic therapists to have my adrenals tested but have been fobbed off although I have had most bloodwork tests done and all come back apparently normal.
Coming back to a point I mentioned earlier which dawned on me when reminded by my mother was that I was a pretty sickly as a child and had quite severe asthma and exczema which they thought was going to be a life long ailment. At the point of about 8 years old my mother took me to see a homeopath after years of ill health, she prescibed mega doses of sulphur and amazingly both asthma and exczema both dissapeared within a year or so. This was great but during my highschool years I suffered from crippling migrains which sometimes lasted for days and discontinued my homeopathic treatment as I became more interested in girls and partys. I have always been extremely active socially and sportingly just seem to get struck down with these things, I just think it is important to take my earlier years into consideration so as not to think I have never been ill so to speak.
This brings us to the present day and I am sitting here writing this after going into work and coming home after an hour because I feel so bad. I have done extremely well to get this far in my quest for help in such a short space of time and have only just started to give myself credit for that, but have tried everything from accupunctue, herbal medicine, massage, blood tests, x rays, cognitive therapy, homeopathy and still feel nothing has touched my "mystery illness", which is why I have turned to Bio-Vitality(24hr cortisol and full hormone profile)as my last resort.
I am extremely sorry for the long sob story but I have no option but to ask you what you think I should do to progress from here, as I am 24 years old and feel like I am in some sort of coccoon on groundhog day and refuse to give up hope of feeling better, which is quite easy from one point of view because I can't feel much worse.
I do feel and have felt all the way through even the worst times that it is something simple that will be the answer, and feel hormones especially adrenally centered hormones and maybe thyroid could be to blame, but I am not putting all my eggs in one basket yet as I have thought "this is it!" before.
I am in a bad way now, feel like there is no help available and my family do not understand at all really. I am on the sick from work for the fifth time this(rolling) year now and know time off is not going to make me better. My insomnia is pretty bad now which isn't helping and to top it all off I have developed an abcess in my tooth which is draining me even more. I have to laugh as i'm writing this, what a mess but really its no joke I cant do anything and most minutes of most days are tortue as I hate the dissasociation or detatchment from reality feeling which is almost constant and the tension in my body is like a nuclear power station waiting to explode. I in fact recently had a session with my oesteopath who tries to tune into peoples energies, he put his hands on my head and passed out!!
I am a very driven person, very ambitious, pretty intense(which I dont doubt has not helped) and will fight this untill the end, but as this illness has progressed I have cut most stressors out of my life, drinking, I dont smoke, dont take drugs and am pretty healthy, have a lovely understanding girlfriend and a lovely house, yet I am getting steadily worse. I do not regenerate or refresh with rest and I feel I am missing out on the best years of my life for no tangible reason!!
If you've taken the time to read to here I salute you, thanks for your time, I just hope these test results from Bio-Vitality(that I had to pay £300 myself as the NHS refused to help) show something or I dont know what to do. By the way i'm male and in the UK, any ideas suggestions greatly appreciated.

Note: this post had a full page of indecipherable HTML code at the end which could not be edited out. Therefore I copied the post and pasted to a new thread.


Co-Moderator, UC forum

Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Post Edited (Judilyn) : 6/25/2008 4:53:28 PM (GMT-6)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/26/2008 9:50 AM (GMT -6)   
I did take time to read your story and it just breaks my heart. One thing that really stands out for me and something that I see over and over again is doctors prescribing antidepressants for symptoms that they have no answers to. IF nothing shows up in our labs then we must be depressed and/or anxious. This mind set frustrates me and I think it can be downright dangerous. Like you, I had a doc who tried 3 different antidepressants for me (effexor, zoloft and cymbalta) and I had bad reactions to them, just like you did. I also had the very bad disconnect feeling and then with zoloft I ended up having hallucinations. These meds made things worse for me instead of better and I have read about a lot of other people who have had bad reactions to them too. I am also very firm with my doctors now that the only reason I ever feel down or depressed is when my illness flares up and I can't do the things I want to do.

I feel bad for you that you have gone through so much and have still don't have a lot of answers.  You very well could have CFS and of course it's one of those diseases that's so hard to diagnose because the symptoms are so vague and there are no labs that tell you if you have it. Did you have your cortisol levels tested? If not, it might be worth trying it. Also, some people with CFS have tried anti viral meds like Valtrex and some people say it has helped. Some people have also tried provigil with mixed results. I've haven't tried either one. I feel like I'm finally on a good combination of meds to alow me to have some sort of life.

I wish I had more answers for you, but please don't give up looking for answers. Some of the specialists that people with CFS have seen are infectious disease docs and also endochronologists. My other thought is wondering if you have been tested for Lyme Disease. The people on the Lyme forum say that the "normal" test for Lyme is not very accurate and that there is really only one or two labs who do the correct type of testing. It would be worth going to the Lyme forum and asking them about this. They also say that you can have Lyme Disease without remembering getting a tick bite.

Unfortunately the CFS forum is really slow so I don't know if you will get any other responses. Also, feel free to e-mail me anytime. Hang in there and know that I am here for you - I went through a lot of the same things and it is so frustrating.

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



Please allow HealingWell to continue helping others by donating:


Co-Moderator: Lupus and CFS Forums

Post Edited (hippimom2) : 6/28/2008 9:30:41 AM (GMT-6)

New Member

Date Joined Jun 2008
Total Posts : 3
   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.

New Member

Date Joined Jun 2008
Total Posts : 5
   Posted 6/27/2008 2:21 PM (GMT -6)   


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:)

Lisa (AKA pain)
Regular Member

Date Joined Mar 2008
Total Posts : 24
   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 aka pain

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   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



Please allow HealingWell to continue helping others by donating:


Co-Moderator: Lupus and CFS Forums

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

New Member

Date Joined Jun 2008
Total Posts : 3
   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.

New Member

Date Joined Aug 2008
Total Posts : 1
   Posted 8/1/2008 8:46 AM (GMT -6)   

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.


New Member

Date Joined May 2008
Total Posts : 5
   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!

Regular Member

Date Joined Jun 2008
Total Posts : 168
   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: 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!!!!


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)

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, August 15, 2018 3:18 PM (GMT -6)
There are a total of 2,993,002 posts in 328,010 threads.
View Active Threads

Who's Online
This forum has 161211 registered members. Please welcome our newest member, StuartS.
273 Guest(s), 8 Registered Member(s) are currently online.  Details
SadColon, Ak123, PDL17, Carib_Lyme, Rinzler, HD_Rider, ExhaustedGirl1, Lexi92