For 10 weeks now since I've crashed I've been having debilitating symptoms that have kept me totally housebound. No doctors know what's going on or how to treat this, most just think it's in my head and I'm having a hard time having them give me any more tests. I'm a 30 year old male.
.I don't think I can take anymore.
Short answer.
Primarily, now is not the time to give up on life. People have been diagnosed with ME and waiting 48 years (since 1969) for help, so put that into context of being extra sick for 10 weeks. Time is precious, but sadly in chronic illness, time is something we have to accept is stolen from us - when at the moment there is no proven treatment.
The best way to cope in my opinion whilst we're waiting for medical help is to answer the unanswered questions you have by getting further medical input.
In addition, see if you can find a support network of some sort, here is a good place to try so you already made the first positive steps. When possible read a few paragraphs, summaries of the latest biomedical research and focus on positive thoughts. 2017 will be the best year yet for ME CFS research.
Now I'll address some specific issues you wrote about:
From what you wrote, I would consider seeing a mental health professional, of which to do so is perfectly normal and not a shameful event in life. We all can develop problems coping and getting help now is far better than things getting out of hand mentally. If this happens, whoever helps you in the end, will then be focusing on mental health as the primary problem, rather than a secondary. That won't help you.
Lets get down the main problems a doctor will re-direct you with and assume you are 'crazy':
1)You say you believe you have sudden onset Osteoporosis, yet this is medically impossible.
2)Pregnant women don't have 'loose spines'.
1)
RE: Chest bone and jaw cracking are very common in long term ME CFS Lyme FMS etc due to TMJ/TMD. You can have this diagnosed either be a dentist or a doctor. If you're worried get a dental x-ray in hospital. I've had creaking jaw since I was a teenager with this illness, that was decades ago.
2) RE:
Pain, IBS, Execessive urination, insomnia, brain fog, depression are all commonly reported in ME CFS and there doesn't need to be anything occult happening in the background.
3) RE:
Dry eyes and mouth can be other causes that you can discuss with a doctor. If clinically indicated ask for a blood test for Sjrogren's Syndrome, which also causes Chronic Fatigue.
4)RE:
Supplements: Before taking significant dosages of supplements in addition to your diet, you need to run blood tests
first otherwise you are guessing you're deficient and can be taking too many supplements and make yourself unwell! Your levels appear to be unknown though. If this is correct and you didn't measure you blood levels first you may have been deficient and now they are normal and you're attributing the symptoms to B vitamins with no evidence either way and getting stuck in a loop of anxiety-stress over worry regarding supplements. We simply don't know.
The sensible thing to do is to stop taking the supplements and then run some blood test
5)
RE: Endocrine
'' I also have many androgenic symptoms such as increased strong body odor, lots of new acne, fat loss, skin tightening, disappeared gyno''.
Tell a doctor and see if they'll refer you to an endocrinologist for a pituitary work up.
6)
RE: Hormone receptors
''I just don't understand how something could develop this quickly....that's why I suspect hormonal receptor insensitivity. ''
To my knowledge the only hormone receptors you can test for which have some possible link in ME CFS would be something like TSH receptor antibodies (rather than a normal TSH blood test done with T4) and pituitary antibodies. These are both specialist tests and probably won't show anything but I'm telling you do de-stress you as now you have the information.
As I said before, if your hormones are all normal, then you don't have a classical endocrine disorder but something more subtle - which then implies ME CFS Lyme. Make sure your blood work that you say was normal included:
24hr Urine Cortisol
Testosterone
Oestrogen
SHBG
FSH
LH
IGF-1
Growth Hormone (Usually very low as it's produced in spikes in your sleep, only a concern if it's high).
Cortisol (fasting 9am)
Prolactin
NB: If you are anxious during the blood draw your Prolactin may be falsely elevated, make sure you have Cortisol done
at the same time as this also goes up with stress. Ergo, if your Prolactin is high, but your Cortisol is normal - then the Prolactin is probably genuinely raised.
If these are all normal, then it's highly unlikely you have anything wrong with your hormones. If you're convinced you have another disorder go and ask for a:
Short Synachten test (adrenal function test)
Pituitary high resolution brain scan.
Growth Hormone Stimulation test.
Both of these are done in Hospital and will need an endocrinologist to 'OK' them. I personally doubt they will do them because your bloods are normal.
7)
RE: Lyme
''Lyme and lupus tests were negaitive.''
Lyme tests aren't reliable at this point in time (2-tier government approved method) so you may consider different ways to detect Lyme without using government approved tests which are limited to one genus B31 Borrelia anyway. There are over 5 other pathogenic strains which labs can test for. Also in patients who are antibody negative, try an LTT method (Lymphocyte Transformation Test). There is also a way to detect the Lyme antigen in urine using nanotechnology. NB: None of these tests are reliable or guaranteed as Lyme can take on a cyst form and also invade tissues meaning the chances of finding it in you blood are slim.
Also remember like CFS, Lyme is a clinical diagnosis. Although positive signs are best, you don't have to have an abnormal blood test to have a diagnosis of Lyme. I fully realise most doctor don't agree with this, but it's on the CDC Lyme website, so it's a 'fact' you can draw to a doctors attention.
8)
RE: Lupus. Having one go at finding Lupus isn't reliable. If possible try and have multiple blood tests and also do it during a flare up.
If you have your ANA tested makes sure they do differentiation and tell you the pattern. If it's positive and homogenous it's OK and you probably had a virus on the day of the blood draw, if it's one of the others like 'speckled' then the chances increase. So do multiple tests.
9)
RE: pinched nerves in my back.
Do you? If this is what a doctor found on an MRI scan they will give you a diagnosis. Otherwise you're guessing you have pinched nerves in your back. Even if you have, this is either a consequence of something like spinal degeneration or simply a coincidence. Personally, I wouldn't worry because as long as you have a firm diagnosis, this is all that matters.
10) RE:
I'm in total pain from the connective tissue weakness
I am presuming this is unverified. If so, then you need alternative area of medicine if you think you have this type of illness rather than you know you have. Get to the bottom of this stressor ASAP. It looks like you need further verification, so try and get it.
Return to a doctor and see what they say. There are other disorders aside from Lupus, many others. From what you tell us, you've only had one Lupus blood test which I am guessing was an antiphospholipid test or an ANA - you didn't say. To rule out other autoimmunity repeat ANA with ENA, P-ANCA, Beta-2 Microglobulin 1, Anticardiolipin Antibodies, DS-DNA, CRP, ESR and then if repeatedly low, this will put your mind at rest.
ME CFS commonly, has normal CRP ESR as the pain is usually neuropathic, muscle and oxdidative stress based. The inflammation markers in the blood for ME CFS (currently) are rarely known about by doctors, so I won't list them as they won't be able to interpret the results anway! For a muscle based attack on your body you'd usually look at things like CK, LDH. You can also look at Aldolase and Myoglobin. Note that exercise falsely elevates these markers.
If you can buy some 'Finger Prick' autoimmune tests online and keep them in the cold (not a heated room). Next time you have a huge flare up, try and send off these test kits on the same day, (E.g. a Fingerprick ANA, or DS-DNA) and see what the results show. Short of going to ER and finding by chance a good doctor who runs various inflammatory blood tests, it's very hard to get diagnosed. I think I read somewhere over 60% of people with autoimmune illnesses are initially told they are crazy, because they have complex conditions that mimic others and the people who see patients, aren't well versed in spotting signs. For example most people believe in Lupus you always have a rash - you don't. Most doctors believe in Asthma you have to wheeze - you don't. Most doctors think that fluctuating genitourinary pain in men is either a urine infection or you're making it up - it can be prostate enlargement, or cystitis *triggered by allergies etc*. Same goes for almost every system in the body. It all comes down to cost, and how much blood you have to give. It's not healthy to be having 10 blood tests a month (for example) to look for every cause possible, as this will only make you anemic or worse. Try and focus on one body area a doctor and you are trying to rule out, and focus on this. It's annoying, but with so many symptoms it because mind numblingly complex, time consuming and expensive to chase every single possible cause, for each set of symptoms.
Conclusion:
You're correct to not want to suffer and find it awful that you have to bare this life as it is. It's good you want to fight it, but you also have to be realistic that if all medical opinion of other diagnosese have been exhausted, then you may well have chronic fatigue syndrome or Lyme disease - of which both have no treatment when chronic - and which is why this forum exists. There are endless other people, in your situation, so we know how you feel.
This is the sad reality of the situation, but there are millions of other people all suffering like you 24/7 and you have to stay strong and be aware that 2017 will be the best year yet for CFS to become legitimized.
It's a terrible situation, but it's unfortunately how it is. Untreated chronic diseases are, by definition, unbearable be it if patients are sick for 1 month or 40 years.
Try and be positive somehow.
There's no other way to think right now, you have to think positively.
RE: Reactions to medications shouldn't be discounted for your downturn in health:
You're taking quite a cocktail of prescription drugs.
The vast majority of PWME PWCFS you will meet cannot tolerate alcohol, never mind prescription medications, and have to either put up with horrible symptoms (such as pain) or take tiny child doses as they are super-sensitive and report bad side effects from drugs like anti depressants, pain medications (Lyrica) and pain killers - basically anything that affects the Central Nervous System.
Also be aware that 'stress'and 'anxiety' can not only be your own mind causing this, but also the side effect of taking medications, especially one's that affect the brain. It is not uncommon to have a paradoxical reaction in taking a drug to make you relaxed, and instead, freak out!
Drugs to make you sleep can also make you not able to sleep.
A vicious cycle.
You keep repeating you have a connective tissue disorder, so you need to get this confirmed. If you don't, then you'll have to drop the idea or it will remain obsessional and consume you, only making you more stressed. A lot of your symptoms could well be organic, and they could also be made worse by stress. E.g. Ask anyone with Lupus and they will report stress makes them far worse.
Note, ironically, that most diseases worsen with stress, not just autoimmune or inflammatory. The problem here in my view, is you'll risk winding yourself up so much, that by the time someone does help you, you'll come accross as a hypochondriac or a somatizer when this is not true, but the stress of the symptoms had driven you to overthink. Then you'll risk being steered into the wrong field of medicine.
So in my view, you need to take a deep breath and go back to your doctor, and both take a fresh look at your past negative results. If this is big issue, repeat the tests, and then you can say in your mind, you know you don't have a connective tissue disorder, you know you aren't taking toxic levels of supplements and you know you don't have sudden onset osteoporosis which is impossible anyway so I wouldn't go tell anyone you think that or they'll divert all your tests away from medicine into psychiatry who'll just blame you rather than rule our organic disease which appears to be the bottom line here.
You're worried about cause X,Y,Z and can't get closure over your anxieties. So try and get closure by getting a definitive answer to your questions whilst remaining as rational and balanced as possible, which is hard to do when very stressed.
Take care and good luck.
I hope you can find something or someone knows of something to help you. Please don't give up.
