What the hell is wrong with me?

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qwerty321
New Member


Date Joined Oct 2010
Total Posts : 10
   Posted 10/10/2010 1:14 PM (GMT -6)   
Overwhelming fatigue, dizziness, nausea, night sweats, brain fog, heart palpitations, confusion, difficulty concentrating, stomach cramps, depression, hot flushes, chills, metallic taste, insomnia, difficulty in waking up and difficulty in finding words.
Does it sound familiar? I've been experiencing these symptoms for the last 3 years. They have started suddenly, they vary in their strength but they never let go. Every day is a struggle and on the days when symptoms worsen I think of death kindly. Doctors provide no help - as long as your tests do not show anything quite abnormal you are not sick from their point of view. They repeat their usual mantra: "Stress, depression, hypochondria".
Users in the forums like this one are much more understanding. A lot of them know exactly what I am talking about, and while some of them know their own illness better than their doctors they usually quite unaware of other medical conditions and have a tendency to see in other maladies the sign of their own illness.
Yet the symptoms that I have listed at the top of the message are common to several different health conditions, namely: Lead Poisoning, Chronic Fatigue Syndrome, Celiac Disease, Candida Overgrowth, Gilbert's Syndrome, Cushing's Disease, Hyperthyroidism, Lyme Disease, Adrenal Fatigue and possibly some others.
The point that I am making is quite simple - it is impossible for me to express how tired I am of being constantly sick and how frustrated I am with the doctors. I hope that someone in the forum can match his or her symptoms with very specific symptoms that I list below (rather than the general symptoms that I've listed on top of this message) to help in diagnosing what the hell is wrong with me:
* Symptoms usually significantly subside with sleep but back to their full strength upon wakefulness. It is not the posture that matters, but rather the level of alertness and emotional tension - the greater the alertness the stronger the symptoms.
* Symptoms usually subside during meals. Meals do not appear to mask them but genuinely reduce stomach cramping, nausea and even the degree of mental fog, yet 20-40 minutes after meal the symptoms return with vengeance and generally are much stronger then before the meal.
* Strong bitter metallic (yet occasionally intensely sweet) taste (mostly on the left side of the mouth) as well as ringing in ears serves as precursors to severity of the symptoms. The more bitter (or rather caustic, almost like sucking on a battery) the taste, the more intense the ringing the more severe the whole group of symptoms for the next several days or weeks will be.
* During periods of severe and moderately severe symptoms which may last for 2-6 months my rather regular herpes outbreaks completely disappear.
* When symptoms gets most severe the ranging in ears masks sounds of traffic and human voices, eyes start to burn and the visual field is filled with a myriad of vary frequently pulsating dots, thoughts shimmer with mental echoes, dizziness prevents walking, intense nausea, caustic metallic taste... It all feels like if every dot of my being is filled with TV static.
* There are generally four sets of pains that accompany the symptoms. Stomach cramping that is usually accompanied by excessive salivation, lower back pains (probably kidneys) mostly happen at night, heart pains and (weirdly enough) teeth pain - that is somehow both dull and intense and feels unlike any normal tooth pain. The sets never overlap, but rather rotate, with some lasting days, other - weeks.
I apologize for already quite long post, and ask for your help. If you, the reader, experience similar set of symptoms and know your diagnosis, please let me know. I also appreciate any thought on the subject that may help with differential diagnosis. Those of you who have the symptoms but like me have no clue of the causes feel free to contact me - let us stay in touch - for sooner or later one of us may find the answer for all of us.

ellbell
Regular Member


Date Joined Oct 2010
Total Posts : 23
   Posted 10/12/2010 3:34 AM (GMT -6)   
Hi querty321.

I am sorry you are going through so much. This forum is s great source of suppot and information. I am usually on the Lyme forum but saw your message as Lyme and cfs are so similar in symptoms and there is also alot of grey areas and debates about links between lyme and cfs.

I have athe symptoms you describe and others. I have had this for 3 years. I am now using a mobility scooter to get about but a year ago could only lie down all day. You are not alone as you will find on this forum.

My main syptoms: fatigue, weakness, muscle and joint pain, headaches, dizziness, nausea, anxiety, ear pain and ringing in ears, sore throat, gland pain, irritable, cough and shortness of breath (cant get enough air), pain behind eye and stomach pains, heartburn.

I was diagnosed with cfs 2.5 years ago. This was after a year of doctors saying its stress, hypochondriac etc. I too felt anger, frustration and jsut like nobody seemed to care or believe I was this ill.
eventually i had to give up work, driving and get home help. I struggled just to get through the day. I became so frustrated with our NHS and doctors I went to breakspear hospital (uk) its private. This was about 5 months ago. They listened to me and decided to do a western blot test with Igenex to check for lyme disease. This came back positive.

I am now on long term antibiotics and supplements. I hope and pray they will give me some improvment.

Are you in usa? It may be worth you having a western blot test, although I know lyme doesnt always show positive. I wish I could help more. I am new to this myself so hopefully you will get more advice from here but I hope that will give you some help.

Keep intouch and let me know how you get on.

qwerty321
New Member


Date Joined Oct 2010
Total Posts : 10
   Posted 10/13/2010 10:15 AM (GMT -6)   
Hi ellbell,

Thank you for your reply. It sounds that you are in a greater trouble than I am.

From what I've heard the Lyme tests may come with false positive and false negative results.
Let us know the results of your treatment.

Every day is a struggle - I too have to deal with it, and the hardest part is keep the mind from diving into depression - since there is hardly anything in life that I am looking forward too. Before I had life - now it is just a collection of symptoms of different severity, but I do know that things can get even worse and, strangely enough, this thought helps - no matter how miserable the moment is, if there is any chance, you are still trying to appreciate it.

Couple of things may help you to narrow down the cause of your condition (they did not do much for me though) - total fasting, if your system can handle it - couple of weeks without food may allow body to detoxify itself and see if the symptoms are allergy-related. You may also try to chart time, duration and severity of the symptoms and build graphs - that may reveal some important cycles that can give you and your doctors additional clues, indicate effectiveness of treatments or, at the very least, give you some predictive powers over the course of the illness.

Yes I am in the USA and state of the health-care here is beyond pathetic - conveyor belt treatment approach, overwhelming reliance on tests and disregard to subjective information provided by patients, absence of independent thinking in doctors and above all prohibitively expensive hospital visits, tests and procedures. By every doctor's visit, treatment or hospital stay you financially penalize your family - and this implants one thought in the mind - they will be better off when I am dead.

Please, stay in touch.

ellbell
Regular Member


Date Joined Oct 2010
Total Posts : 23
   Posted 10/13/2010 3:48 PM (GMT -6)   
Hi Qwerty

Thanks for your suggestions, dont think I could fast for 2 weeks!! I think food is one of my enjoyments cant give that up. I will start keeping a diary or record like you say will perhaps recognise patterns.

I understand what you mean about " use to have a life" . At first I use to wake up everyday thinking okay today it will be gone ...but it wasnt I realised I was setting myself up for a fall. It took a long time to accept I was not going to have the old me back with my life . Although I have not given up hope of improvment. But I went through anger, frustration, denial and depression, who wouldn't eh. But it I agree it could be worse, I try and appreciate smaller things. I also have a young son who gives me strengh. I say that but there are days when I struggle to cope with it.

Have you tried any supplements? What is your general doctor like and have they done a range of blood tests?

I have found with most docs unless you have something specific and in your face they say oh its stress or anxiety!! Do they really think we want to feel this way!! I know its alot different here to US, in healthcare. I am sure your family prefer to have you than money. There is only one of you and I am sure you still got alot to do, this is just part of your journey I am sure who ever is up there has got plans for you and even though you feel this way your family love you and need you.

Funnily enough although the process is been painful and hard I have learnt some things I never knew. I have lost friends who I thought would stick with me but I have gained friends and had support from people who I would not have thought. I have learnt to ask for help and accept that at the minute I cant do everything for others but this time is about me and trying to heal and thats ok.

Take care.....Maxi

SiriuslySmitten
Regular Member


Date Joined Oct 2010
Total Posts : 36
   Posted 10/13/2010 8:32 PM (GMT -6)   
You have described alot of what I feel on a regular basis. I'm currently in the throes of a huge flare up - have been since June. I have been crying off and on for days. I don't feel well, no one seems to know how to help me, and I don't know how to help myself. I want to sleepor hide in a hole. My job is at risk, my supervisor is being a complete jerk about it. A PA-C at my doctor's office has referred me to a rheumatologist - that's tomorrow morning. The main doc there - she told me to talk to my shrink.

I'm not crazy. But I can't seem to find anyone who takes my symptoms siriusly. I'm sick and tired of being sick and tired.
If you want to know what a man's like, take a good look at how he treats his inferiors, not his equals. ~ Sirius Black

Be yourself, don't take anyone's s**t and never let them take you alive. ~ Gerard Way, My Chemical Romance

qwerty321
New Member


Date Joined Oct 2010
Total Posts : 10
   Posted 10/14/2010 1:21 PM (GMT -6)   
Hi ellbell,

One thing that the illness revealed for me is how much suffering there is out there. We are lucky in a way that our illnesses probably have natural causes... but what about people whose lives been ruined by will of others? People who are locked up in hospitals, prisons, nursing homes, concentration camps, who are killed by work conditions, pollution, outright violence. Others may think that I am getting crazy but I can't escape the thoughts of how animals suffocate in waters polluted by people, how old men and women rot in their nursing homes... More then almost anything else, I want to have my health back, but in certain way I appreciate my illness, it opened my eyes to the aspects of the world that I would not be capable of experiencing otherwise.

Stay in touch.

qwerty321
New Member


Date Joined Oct 2010
Total Posts : 10
   Posted 10/14/2010 1:56 PM (GMT -6)   
Hi SiriuslySmitten,

Over the course of illness I have learned several rules that may help you to deal with your condition. Here are some of them:

Think logically by process of elimination what can cause your symptoms. Is it food? Try fasting. Is it environment? Try moving to different place. Does anything makes a difference in your symptoms for good or bad? Think of medications, different foods, stress, anything at all? Chart strength, duration and frequency of your symptoms.
Coordinate with your doctor to have standing order for blood and urine tests and when you feel particularly bad go to the lab for those tests. Don't expect doctors to do the right thing, tell them what you think need to be done. Have a second doctor opinion if you can afford it.
There are different type of medications that you can try - wide spectrum antibiotics against possible infection, Anti-inflammatory against some auto-immune reactions, and so on - your goal is see what makes a difference. Use logic - body is a machine and something is malfunctioning.
Do a bit of a investigation every day - to keep hope alive. One of the worst complication in my experience is a depression. You can literally go crazy if you do not keep yourself upbeat - groups like this help.
The fact that I went nowhere with my own advise does not mean much - you may have different condition or simply better luck. When it comes to my symptoms - frequent small meals, herbal teas - like paper-mint or chamomile and a lot of rest help a bit.
Look at the symptoms for following illnesses: Lead Poisoning, Chronic Fatigue Syndrome, Celiac Disease, Candida Overgrowth, Gilbert's Syndrome, Cushing's Disease, Hyperthyroidism, Lyme Disease, Adrenal Fatigue - they are very similar but not identical, you may be able to spot your cause.

You can probably help yourself more than any other person, including doctors. Nobody is interested in your health more than you do, so it is up to you to do something about it. Don't expect other people to empathize with you too much - they do not feel like you do and that is OK.

qwerty

littlehutton
Regular Member


Date Joined Aug 2010
Total Posts : 96
   Posted 10/31/2010 6:20 PM (GMT -6)   
Hi qwerty321

I have to say that I have all of your symptoms, and more. I have been through every test in the book imaginable, and I am now being investigated for Lyme Disease. I have had 2 Lyme tests previously which were both negative, however I have recently had the Western Blot done and am seeing a Lyme Literate Doc, so hopefully I should have the answers soon.

I would strongly recommend that you do the same asap, I would imagine that Lyme is a strong possibility based on your symptoms, and it needs to be eliminated one way or the other.

ellbell

I have been to the breakspear for my tests also, I should have the results any day now. Do you remember how long your results took to come through?

Good luck with the abxs, I hope your feeling much better soon


Littlehutton x

qwerty321
New Member


Date Joined Oct 2010
Total Posts : 10
   Posted 11/1/2010 11:11 AM (GMT -6)   
Hi Littlehutton,

I appreciate your answer very much. Since some of our symptoms are similar and one of us may discover the cause of his/her condition let us keep this thread alive and inform others on positive diagnostics or some other helpful information that me may come up with. Some of the symptoms are so puzzling (and unique) that I want to double check and confirm that you have experienced something like them. If that is the case it would certainly support the theory that we have the same illness:

- stomach cramping that come together with mental fog and bitter (sometimes metallic or sweet) taste in the mouth ( the weird thing is that the taste affects predominately left side of the mouth).

- fits of unexplained tooth aches - when both jaws are hurting a lot and yet it is unlike any normal tooth aches you would ever have - it is very difficult to describe what the difference is - something about the nature of pain, its intensity and dullness - it has some sort of "electric" quality to it.

- lower back pains that last for many hours and somehow affect kidney function - you either run to the bathroom every few minutes or do not go for hours even after a lot of liquid intake.

- shimmering quality of thoughts, mental fog and pains - you fill like being "plugged in" - difficulty or impossibility to relax, staying "wired" even in sleep.

- intensity of ringing in ears that goes hand in hand with intensity of metallic/bitter taste and the intensity of mental fog and genera fatigue.

There are a lot more general symptoms that I could go over, but that would defeat the diagnostic purpose.

I am trying to take diagnostic course of Acyclovir to eliminate neural manifestation of Herpes infection - one of the users with similar symptoms on other forum indicated the difference that the medication made. I will post the result after the course is over.

Please stay in touch.

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 11/4/2010 12:27 PM (GMT -6)   
Look up myalgic Encephalomyelitis. They try to bury it as calling it CFS. There is a great article on it in Disapedia.
 
M.E. has been turned down in funding. 4 million have it and the symptoms are awful and change. My husband has it, he researched it himself b/c the doctors don't seem knowledeable.

qwerty321
New Member


Date Joined Oct 2010
Total Posts : 10
   Posted 11/8/2010 9:59 AM (GMT -6)   
Hi Denim,

Thank you very much for the reply. I have looked up ME and it indeed sounds very similar to my condition. In fact some symptoms appear surprisingly fitting - like sensitivity to perfumes, detergents, etc. ME very well may be exactly what I have, yet differential diagnostic is essential since the whole list of other illnesses (I have mentioned them in the beginning of the thread) display similar symptoms. I try to make my environment as chemical free as possible and eat only certain simple foods, but nothing seems to help.

I will spend time researching ME and hopefully find some facts that help me to cope with the condition. If I find something interesting I will surely post to the thread. So far I can report only negative findings:
10 days on Acyclovir produced no changes whatsoever.

Again, I really appreciate you reply.

BetterThanHellThough
Regular Member


Date Joined Feb 2011
Total Posts : 50
   Posted 2/7/2011 9:51 AM (GMT -6)   
Hi Qwerty and ellbell,
I don't have the CFS, but felt exhausted for about 1-2 years around 2004-2006, even stting was to much I would rather lay down. I was actually burned out as thy say> Too much work, streess, severe sleep depriviation for years and then I collapsed. Now I am much better, I have recovered from insomnia, depression, extreme weakness, and just suffer with chronic indestion and bowles problems.
I wanted to say a word or tow about your posts>
I would beleive that fasting would worsen your condition. Of course it is a good idea to detoxify your body, but please don't fast, this is to violent a stress for a sick organism. If you suspect something from the food, try what my mom did last year> She is suffering form hyper electro-sensibility, the "new sickness of the XXI century" not acknowledged yet in many countries (You can google that and see if it rings a bell)> si what she did is eat only one thing a day and then let 4 days pass before eating it agan. in between you can see if you digest it well or not. So you shift from one thing to the other. There is a special method she learned in Belgium, it heped her a lot> She dropped all diary because it became obvious that she could not digest them.
Another thing is that I would advice homeopathy and Tibetan medicine.
Homeopathy by a good expert who can identify your sort of constitution or typology, and improve the whole thing, not targeting one symptom or anything but the whole system, your specific type.
Tibetan medicine, if you are interested, look for it on the Web> The Medical Institute of HH the Dalai Lama is in India, in Daramsala, they can help and send medicine by post.
I am happy to see that sickness makes you think about greater misery on earth.
This makes your trouble a blessing, I believe>
In any case, positive thoughts, relaxation, compassion and the like all improve our health.
Yoga is amazing as well.Immediate better energetic circulation, and real improvement in the long run...
Did you try that?
since we will die anyway one day, meanwhile developing our inner spiritual strength makes the whole story extremely meaningful

BetterThanHellThough
Regular Member


Date Joined Feb 2011
Total Posts : 50
   Posted 2/7/2011 10:39 AM (GMT -6)   
Back to hyper elecrosensitivity
it is due to electromagnetic pollution in the environment. Many doctors don't take it seriously but the number of cases increases, including physicians themselves, to such an extent that the facts cannot be denied anymore and measure have been taken in several countries> The pb is acknowledged officialy in the UK, Sweden, Canada, Israel, etc>
Symtomes are not uniform, it depends on individuals.
See if keeping away from cell phone, computer, wi fi etc brings some relief.
As for your "weird" symptoms, they remind me a class of symptoms in the "lung' category, something related to prana or nergy circulation.
Well this may sound even more weird.
Above all i wanted to say, each organism is unique, with many layers, from the gross physical to emotional and all that, so you can't expect, in a complex sickness, that the symptoms listed for somebody else or a standard case wwil 100% fit>
The left and right distinction in symptoms is very much acknowledged in homeopathy.
have ringing sound in the ear whenever I am stressed> Right ear is a high modulating sound, like the reverb of a tiny bell, the left ear is very low tone, like a lorry passing in a faraway road on the wind howling in a gorge. This symptoms are all acknowledged by Tibetan medicine, which is an energetic medicine, holistic.
Good luck
and thank you for your positive mind, it is inspiring to read your post

dubberlykm
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/7/2011 10:26 PM (GMT -6)   
Do any of y'all have fever with these symptoms? I've been sick for four months with chronic fatigue, daily fevers ranging from 101-103, sometimes lower for a couple days, but never below 99, depression, muscle pain, headaches, swollen tonsils, swollen gums/tongue, and unusually cold extremities. So far, none of my doctors know what it is. One doctor suggested Post-Viral fatigue syndrome, which I think is similar to or the the same thing as CFS. I'm just not sure if fever goes with that or not...
I just got blood work done for Lyme, but that is such a controversial disease right now, and so many doctors are hesitant to diagnose it (usually for good reasons), so I'm not getting my hopes up.

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 2/8/2011 9:37 PM (GMT -6)   
Hi

Do your symptoms get much worse on your period?

Does drinking alcohol make you sick?

Can your husband smell this mettalic taste/

Do u feel or have u ever felt like u are being pluggged into an electrical outlet?

Your symptoms do sound like mine even the food part. However, like lyme, ms, chronic fatigue and others are so similar its frustrating. Frankly its especially frustrating when most of the above, excluding ms, don't have definitive tests like say cancer or strep throat.

The only reason I know I was infected with some type of lyme disease (there are so many little subtypes) is I had the rashes.

The problem with lyme tests as u probably know is their inaccuracy

I am so sorry u are sick, i pray u find the road to recovery very very soon,.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2049
   Posted 2/22/2011 10:30 AM (GMT -6)   
PLEASE PLEASE get tested for lyme disease! Did you get tested? Do you have copies of your lab reports? A negative result does not mean you do not have lyme. Please get a copy of your results and post them on the lyme forum. I had all of your symptoms including the mysterious tooth pain. The longer you wait the longer it will take to get well if in fact it is lyme. Best of luck to you.
Lyme, HME, HGE, bartonella. 4 years undiagnosed despite 10 drs.
Current meds: roxythyroxine, bactrim, doryx, amanatadine, neurontin, xanax, valtrex, cymbalta
Prior meds: amoxicillin, probenecid, minocycline, tetracycline, doxy. IV refused by insurance. Supplements: potassium, boluke, alpha lipoic acid, ag immune, magnesium, milk thistle

Sickmomma
New Member


Date Joined Mar 2011
Total Posts : 7
   Posted 3/1/2011 10:17 PM (GMT -6)   
Hi I'm sorry I didn't read anyone elses responses first, but YOU and I seem to have alot in common. I have been gong through a very similar situation for the last year with fever and night sweats as well and only had my dang dr run some basic tests on me, make up excuses and then tell me to go talk to my counseler because it must be in my head because all of her BASIC tests turned up okay. I had also seen several other types of dr's too, but nothing was adding up. Finally I found another PCP who took medicaid and he ran more tests and actually listened. (I took in my husband with me so that I wouldn't get that whole, 'its in your head thing') anyways I am now seeing an Internal Disease Specialist through my hospital who is actually trying and getting to the bottom of things. He has finally told me he believes I have CFS, but for you my friend, I am sure with the tests that a person like this can run, you need to see one. YOU HAVE RIGHTS!!! INSIST!!!!! Trust me, that is finally what I had to do. Take that bull by the horns and say enough is enough I don't want this anymore, and if I can't fix it at least having a label helps you feel like you know what your fighting and gives you a little peace. I hope this helps you. And this type of specialist WILL test for lyme disease as well as almost anything else you can think of!!!! Its your best shot. I'm sorry for your struggle and hope for the best for you.

Sickmomma
New Member


Date Joined Mar 2011
Total Posts : 7
   Posted 3/1/2011 10:21 PM (GMT -6)   
dubberlykm said...
Do any of y'all have fever with these symptoms? I've been sick for four months with chronic fatigue, daily fevers ranging from 101-103, sometimes lower for a couple days, but never below 99, depression, muscle pain, headaches, swollen tonsils, swollen gums/tongue, and unusually cold extremities. So far, none of my doctors know what it is. One doctor suggested Post-Viral fatigue syndrome, which I think is similar to or the the same thing as CFS. I'm just not sure if fever goes with that or not...
I just got blood work done for Lyme, but that is such a controversial disease right now, and so many doctors are hesitant to diagnose it (usually for good reasons), so I'm not getting my hopes up.


Hey Idk if you'll get this because of the way you posted but yes, I have had a fever of between 100-102 for over a year with on and off heavy night sweats with those other same symptoms. Go see an Internal Disease Specialist... Insist on it. Its not in your head, go see a specialist. He/she will test for EVERYTHING. Good luck.

DocGP
Regular Member


Date Joined Feb 2010
Total Posts : 183
   Posted 3/5/2011 5:49 PM (GMT -6)   
Fevers should yield an infectious disease search...lyme and co-infections, others, depending on where you live or have traveled. I have felt like you, worsening over 20 years. It's awful. I want my life back, too. Get tested. Just keep trying.
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