August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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I feel like giving up on life

Discussion in 'General ME/CFS Discussion' started by Konflict, Mar 28, 2017.

  1. Konflict

    Konflict

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    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 was taking vitamin E mixed tocopherols as well as an active B complex with folate, p5p and methylcobalimin. Had a minor crash but bounced back. 3 weeks later I started using vitamin K2 mk7 and 2 weeks after that I had a major crash causing severe physical symptoms.....the worst of which is connective tissue deterioration in my joints, tendons, ligaments and nerves. It's causing me joint hypermobility when before my joints were stiff as a kadaver. My spine is as loose as a pregnant woman's and even my jaw and chest bone are cracking. This is all accompanied with pain. I'm also experiencing IBS/constipation, excessive urination, dry eyes and mouth, severe insomnia, brain fog, depression, slow growing hair and nails.

    Now I know many of you will say it's the active B vitamins that did this, but I crashed 5 weeks after discontinued use of them...I believe the new issue is hormonal receptor insensitivity, but I cannot prove this. I say this because I have low estrogen symptoms system wide. Most the above symptoms are due to low E, and I also have many androgenic symptoms such as increased strong body odor, lots of new acne, fat loss, skin tightening, disappeared gyno.

    I can hardly hold up my iPad and talk without the tendons in my hands burning, and when I straighten my elbows the weakly crack several times. This has rapidly spread in just 10 weeks and I feel alone in all this....that I'll never find a cure or help for this. I really don't know what to do. All the tests I've done show "normal" hormonal levels but are all on the lower end (down regulation). Lyme and lupus tests were negaitive. In the past I have taken saw palmetto and finasteride which can cause gaba AR dysfunction, but no doctors believe finasteride can cause long Term side effects (big pharma telling them most likely).

    I believe I have a sudden onset of osteoarthritis as the connective joints in my back are corroding, I now have pinched nerves in my back but I have done ZERO strenuous bending nor lifting at all.....most of my day is spent on the couch or in bed. My back is in such pain I can hardly move, just sitting is uncomfortable and have to fidget every minute or so just to lower the pain, I can't sleep a wink even with benzos or ambiens....I'm at my ends wit. I really don't think I can go on living like this without a doctor looking into anything or trying to treat this. I'm really on the verge of doing something i don't want to do, but I'm in total pain from the connective tissue weakness. Just now I took a deep breath and my back cracked 3 times....I don't think I can take anymore.
     
    Last edited: Apr 2, 2017
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  2. Jennifer J

    Jennifer J Senior Member

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    I'm sorry you are in so much pain. :hug: I hope you can find something or someone knows of something to help you. Please don't give up.
     
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  3. lansbergen

    lansbergen Senior Member

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    The combination parcetemol and Benzydaminehydrochloride cream helped me with the pain. I have improved enough now to only need it sometimes..

    Did you consider bandages?
     
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  4. Konflict

    Konflict

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    @Jennifer J I just don't understand how something could develop this quickly....that's why I suspect hormonal receptor insensitivity. I don't think I've read one case here that has developed this rapidly. Only other person was Douglasmitch and sadly his body was a wreck after a year of suffering.....he lost 80lbs, couldn't pass a stool without enema, developed colonic inertia, and his stomach stopped working. He also took a drug like finasteride, and He committed suicide in September 2016 from his physical condition. I just feel I'm going to suffer the same fate.

    @lansbergen I've been on Ibuprofen since last month and Vicodin since my back spasms/pinched nerve but hasn't helped one bit....wonder if something is wrong with my liver and or stomach that's causing me to not feel these therapeutic efforts of the drugs. Also the benzos and ambiens are not helping much with sleep. I just feel this potential hormonal induced connective tissue disorder I gave myself is going to progress at a fast pace until it gives me a stroke or heart attack. I honestly have zero hope right now as I have some undiagnosable syndrome that's rapidly spreading. Doctors don't give a shit they just listen to big brother pharma.
     
  5. lansbergen

    lansbergen Senior Member

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    I have not treid vicodin but ibuprofen did nothing for me.
     
  6. Konflict

    Konflict

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    @lansbergen Vicodin is an opioid and basically as good as it gets for pain meds.....does nothing for me really. I just feel I have super unstable body and some perfect storm screwed me up for a short painful life.
     
  7. Konflict

    Konflict

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    It's not the pain I'm worried about.....it's the rapid deterioration of my connective tissue. I feel I should be having a Dr do a case study on me but I can't even get a damn MRI on this bullshit insurance network. Just don't forget to put me in the remembrance section here.....
     
  8. Invisible Woman

    Invisible Woman Senior Member

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    @Konflict - I don't have any answers for you - I wish I had.

    I just hope you find a breakthrough soon.

    My heart goes out to you.
     
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  9. lansbergen

    lansbergen Senior Member

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    I decited early in the disease no opioids for me.
     
  10. Eastman

    Eastman Senior Member

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    Could it be the K2? 2 weeks on K2 seems a bit short to be causing such severe symptoms but I did find this post:

    There are also reports of vitamin D "causing" tendonitis. Perhaps something similar is happening here.

    In the meantime, hang in there. Hopefully you'll find a solution to your problem.
     
    xrunner likes this.
  11. Tunguska

    Tunguska Senior Member

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    I've been in your shoes, it ends eventually, but some of my symptoms were opposite yours so you have to take this with extra salt.

    Vicodin causes and exacerbates constipation.

    Vitamin K2 has poorly understood interactions (with calcium, purines like caffeine). It gave me serious tendon pain such that I couldn't use the limbs and it took weeks to improve.

    I cured (yes cured) dry eyes with a protocol containing high-dose biotin (with high dose lysine and inositol), and a couple of your symptoms match biotin deficiency. But others could do it too, pure guess.

    If you took E and K2 but no A and D (you don't mention), that was a mistake. The problem now is supplementing A or D or eating liver could temporarily make your symptoms worse. But A needed in hormone synthesis (with cholesterol), skin, and loads more, even though it opposes estrogen.

    All of those need the 4 major minerals to work: Ca/Mg/Na/K. Body responds better if you get all 4 at once from food and/or supps, trying 1 at a time is just extending pain. They also need copper and zinc, but copper (liver) is pain.

    You can sometimes shortcut things with pregnenolone or progesterone (that one was a major help to my joints and tendons, more than anything else listed), but it's possible they could make you worse.

    Nothing heals on low protein.

    That's all my internet time, hope that's of some use.
     
  12. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    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.
     
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  13. Wishful

    Wishful

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    It may not apply to you, but I found that B3 and B12 both (separately) induced severe suicidal moods in me. Not all 'healthy foods and supplements' are healthy for people with medical disorders. It took a while for me to realize that niacin was a problem for me. The B12 was obvious the first time I took a tablet. For what it's worth, when I told my doctor the result from taking B12, he didn't believe me.
     
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  14. ebethc

    ebethc Senior Member

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    Tramadol is a great non-narc pain reliever IF your gut can tolerate it...mine couldn't
     
  15. Hugo

    Hugo Senior Member

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    I understand that this must be terrible.. it sounds like a scary state for you to be in. I can relate to when I got lyme I got pain and nerve sensation I never had before. Where did you test for lyme? Have you visited a Rheumatologist or a ordinary GP or a neurologist to rule out other illnesses?

    Lyme can be treated if your lucky even if youre in late stage lyme.. at the very least its possible to get the lyme in to remission. So its by no means not possible to be better.. it didnt work for me but I know it did for others. You may also have coinfections so its important to check for that aswell. There is a new way to take antibiotics where you pause it a couple of weeks so the lyme bacteria will come out of hiding and then attack it again with antibiotics. Tetracykline (not doxy) in rather high dosages are used for this kind of treatment.

    I think you need support from family and friends or a partner. If you dont have this Im sure there are people here in this forum that can talk to you and provide some emotional support and also some practical help.

    Pain seems to be the worst symptom right now. Maybe try something else like gabalin or pregabalin could help. If your liver is bad it will show in AST and ALT. If you have problem the liver is generally a suberb organ in repairing itself. Take milk thistle for your liver (it really helps I know) and stop some of your drugs you are taking right now if they are not helping you anyway it wont matter.

    You seem very scared..its ofcourse understandable but remember if you are scared you will have an overactive amygdala and that is not helping you. It will reduce activity to your frontal loobs and you will not think in a rational way. It will lead to catastrophic thought that are non productive and will hurt you both mentally and probably will make your symtoms feel even worse.
     
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  16. Konflict

    Konflict

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    Thank you to everyone who wrote a response, I will respond to all of the comments tomorrow as I'm really not feeling great today.....my hands hurt just holding my tablet.

    But I will respond to tonight @Research 1st thank you for the very informative long reply, really.

    That's the trouble I've been having is ANY doctor in my network giving me tests, they act as if the handful they've given me was doing me some huge favor. Thats the scary thing about my spine/neck cracking and pain, I have literally done no kind of strenuous work or anything to cause a pinched nerve. When I bend or twist my joints in the spine and neck sort of "slide" and crack and feel out of place. That's why I feel it's a connective tissue or collagen disorder (possibly due to estrogen receptor dysfunction). People who have taken finasteride and have long term side effects from it develop an Androgen insensitivity.....which I mildly had for years and doctors ignored and thought I was imagining things dispute low Testosterone for being in my low-mid twenties. I think these may possibly be epigenetic changes (that's what's currently being studied by Baylor and Harvard). I feel taking the vitamin E (which changes estrogen receptor expression) and the K2 (which raises intratesticular testosterone levels and inhibits new estrogen metabolism) caused another persistent change and is undectable. I know it sounds crazy but this is my current situation and Doctors also think CFS is non existent.

    I know estrogen is very involved in collagen synthesis and sodium regulation which is why I believe it's an endocrine hormonal issue at the receptor level, which will probably be undetected forever. I don't know how to get the MRI despite telling them how much pain I'm in and my symtoms (I don't tell them about the finasteride or vitamins causing these as they'll just ignore everything from that point on). I mean my spine, neck, ALL joints are cracking easily now. My joints bend farther than they used to, which is progesterone and estrogen related. This isn't EDS for sure as that's hereditary. I guess my main problem is I can't get any doctors to help me get the tests I need.
     
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  17. Tunguska

    Tunguska Senior Member

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    I actually think you're not completely off about estrogen, and endocrinologist are remarkably unhelpful on this, but estrogen can't explain your whole crash. It would have to be in concert with other problems, such as, cortisol resistance maybe (documented to happen) (assuming it's not just plain tanked), at that point circadian rhythm goes out the window. In turn forces your body to rely on (nor)epinephrine. Somewhere in there glucose regulation goes out of whack. It's all downhill from there. But one hormone is not enough to explain all this.

    (The cortisol test is the most important, but even if it came back low-normal it could still be a problem... and they don't give you any great solutions other than replacement)
     
    Last edited: Mar 29, 2017
  18. Hugo

    Hugo Senior Member

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    I did not know anything about finasteride but when I read about it seems like there are some people that have experience strange hormonal unbalances. Strangely enough a CNN piece on Trump handle this subject http://edition.cnn.com/2017/02/02/health/trump-drugs-propecia/ it seems like they do investigate this drug more now though.

    I understand your worries seems like a hard situation, there are doctors that are interested in testorones levels mine who is in to lyme treatment check for that regulary. You probably would need a doctor that is openminded. Where do you live?

    When I searched for this on internet this endocrinologist seems to be good for you since his expertice is androgens and he knows about the negative effect of finasteride
    http://www.gwdocs.com/physicians/michael-s-irwig. If you live in US maybe you can visit him or have him talk to your GP.

    I dont know if you feel regrets about using finasteride if that caused some of your problems. Its always easy to do everything right in hindsight but nearly impossible in real time when you dont have all the information at hand so if you have thoughts like that dont be so hard on yourself.

    Hang in there, things will be better.
     
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  19. Tunguska

    Tunguska Senior Member

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    Assuming he took finasteride a significant time ago it's highly unlikely it has much to do with this crash. It does cause a long-lasting persistence syndrome - with depression and brain fog (due to lowered allopregnanolone, which has solutions) and libido problems - but he would already have had and been familiar with all the symptoms.
     
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  20. Shoshana

    Shoshana Northern USA

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    Thinking of you @Konflict

    and I do hope for some improvements for you.

    Just want to say that I have seen your posts and care.
    I am sure that many people here, like me,
    have read your writing, and do care what happens to you.

    WIsh I had suggestions.
    I am sure others do too.
     
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