1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Frustration and confusion

Discussion in 'General ME/CFS Discussion' started by leasam, Oct 2, 2013.

  1. leasam

    leasam

    Messages:
    3
    Likes:
    1
    Hello all,

    I have been suffering with symptoms for over a year now and drs are being reluctant to give or tell me anything that helps me. I will give you a brief run through of my difficulties.

    I am 35, I WAS a fitness instructor. In March 2012 I lost my sense of smell, I was given antibiotics to clear up any sinus infection I had previously and a nasal spray.

    6 weeks later I returned to gp with the same symptoms and given another nasal spray.

    By September my smell had returned but was very distorted, food, anything that was perfumed, car fumes all smelt really quite bad, rotten, mouldy and chemical.
    things got so bad that I couldn't eat, couldn't be around anything that involved food, perfumes and exhaust fumes.

    I returned to my gp and was sent to see ENT drs, by this time I had become exhausted had to reduce the hours I was teaching, began losing weight, became very anxious as I didn't have a clue what was going on and it seemed nobody else did either.

    On the evening of November 19th I experienced seizure like episodes, I actually thought at one point I was having a stroke as my face had gone numb on one side, I couldn't feel my hands and my speech became slurred. I couldn't move well at all, my vision became blurry and I felt like I had had a few too many to drink.

    I went to A&E the next day as the symptoms hadn't resolved. I had a mri scan which came back with nothing.

    From that day on my life has turned upside down.

    I lost 2 stone in around 6 months, I have problems with vision, balance, memory, cognitive function, taste and smell, bladder, bowels, temperature regulation, swallowing, speech, joint and muscle stiffness and weakness, extreme fatigue, almost fainting when I stand up or stay up right for too long headaches and prob some other things I can't remember!

    I have seen 2 neurologists 1 told me I am converting stress and the other that I have a migraine disorder and was stuck in the aura phase, he stated in his report that my symptoms resemble MS but as I had a clear mri scan he was going to diagnose migraine.

    I was put on amitriptyline and take 100mg a night and as yet have seen NO improvement only a very dry mouth!!

    My own gp seems baffled by the whole episode as nothing is easing up or changing.

    I asked him last week if he thought it could be M.E and he said that I didn't have a sore throat or swollen lymph nodes so no it couldn't be that and requested that I have an ecg as my blood pressure has been all over the place since this started and on exam my heart was racing. He is also testing my thyroid.

    I came home and did a little googling about smell and taste and M.E and came across a number of forums with many posts about people's smell and taste being distorted.

    I feel like the medical profession has kind of given up trying to sort it out. I've had to battle to get a dietician referral so I can get some food supplements, I am now on pro cal and fortijuce supplements and have gained half a stone taking my weight up to around 8 stone.

    I am so tired of it all, my social life is non existent as I struggle so much with smells, noise, constant dizziness and sickness and fatigue.

    Any advice, suggestions will be appreciated as I am desperate for answers....

    Thanks for reading x
    rosie26 likes this.
  2. peggy-sue

    peggy-sue

    Messages:
    2,496
    Likes:
    2,869
    Scotland
    Your gp is completely wrong when he said this:-
    "I asked him last week if he thought it could be M.E and he said that I didn't have a sore throat or swollen lymph nodes so no it couldn't be that"

    I have ME, I do not get swollen glands or sore throats, I also do not get headaches.

    These are not compulsory symptoms, but "included" symptoms.

    100mgs of amitriptyline is a pretty massive dose!:eek:

    Just 10mgs put me on another planet.:alien:

    How did you cope with it?

  3. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,187
    Likes:
    1,370
    Left Coast
    leasam. I'd love to answer but I can't read your story because I can't read huge chunks of text. Could you go back and put in paragraph breaks every 2 or 3 sentences? you will be helping me and many others who would love to respond to you but can't because they can't read this.

    Thanks.
  4. Ema

    Ema Senior Member

    Messages:
    3,161
    Likes:
    3,272
    Midwest USA
    You're also welcome to ask a moderator to help :)

    I have no trouble adding line breaks and spacing without adjusting any of the content.

    Ema
    Sushi, SOC and SickOfSickness like this.
  5. Ema

    Ema Senior Member

    Messages:
    3,161
    Likes:
    3,272
    Midwest USA
    Have you had any adrenal/cortisol testing?

    Ema
  6. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,187
    Likes:
    1,370
    Left Coast
    I started a thread about this and someone suggest I just tag the person and ask. I just need "white" between lines. It doesn't have to make sense where they are. Just hit return again.

    Mink
    SickOfSickness likes this.
  7. peggy-sue

    peggy-sue

    Messages:
    2,496
    Likes:
    2,869
    Scotland
    From your posting, I am suspecting you are in the UK - probably England?

    Unfortunately, the medical profession is ignorant about ME.
    All they have are the NICE guidelines, and even if you have a gp that does believe you are ill rather than psychologically disturbed, his/er hands are still tied by the guidelines.

    You won't be able to get most of the tests folk will mention here. :ill:
    rosie26 likes this.
  8. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,806
    Likes:
    906
    US

    A lot of the medical profession doesn't believe we are ill :( They think it's psychological.

    It is crazy and many of us don't go to doctors anymore. Most of us read and learn and treat ourselves with supplements. It is cheaper that way anyway.

    Glad you gained some weight. If you can afford it, try some holistic Eastern medicine practictioners.

    I don't think your main problem is a migraine, but maybe it is adding to your symptoms. You should try avoiding migraine triggers as much as possible, and see if that helps.

    Are you sure some of your symptoms aren't from medications or supplements?

    It is a difficult situation to be sure :(
    rosie26 and leasam like this.
  9. chronix

    chronix

    Messages:
    62
    Likes:
    58
    I've also had the phantom mouldy/chemical taste and smell. I've used Nystatin about 3 times when my tongue were coated and it helped.

    I've never had a sore throat since getting ill. Only mildly swollen glands at one stage, otherwise normal.

    You might want to ask for a benzo to take the edge off your anxiety. Just watch out for addiction.

    What are your eye symptoms like? Floaters, tunnel-vision, static?
  10. leasam

    leasam

    Messages:
    3
    Likes:
    1
    Hello
    Thank you for your replies.

    I forgot to say that prior to losing my smell I suffered with a horrible sinus infection probably about 6 weeks before.

    I then had a head injury at the end of May.

    August I gave up smoking in the hope that my smell would return which it did but all messed up. Things haven't been the same since.

    I started on 5mg going up every 4 days until I reached 25mg then every 2 weeks until I reached 100mg to be honest I never thought I would get to that dose as I can't even take a paracetamol without feeling sick!

    The first 2 days were the worst I felt like a complete zombie!

    Now they just give me a dry mouth and I don't feel so anxious about the whole situation.

    I believe I had my cortisol checked in January with a whole host of other tests and no further action was needed.

    I have NO idea what triggers the migraines that I actually didn't have until I started amitriptyline.

    I keep trying to explain to the professionals that I experience all these symptoms 24hrs a day 7 days a week there is no break so it's impossible to find the trigger.

    I was prescribed this also, however I was told by one nurse that I had white spots at the back of my throat and my tongue was white and that was probably causing my swallowing problems, I then saw a nurse at my surgery 3hrs later and was told my throat looked fine and my tongue was normal so to stop using it. And they wonder why I am getting confused!

    I have floaters, double vision, coloured snow storm and scintillating scotoma. Whenever I stand up I feel like I am going to pass out and that's when I get tunnel vision.

    I had my eyes checked about a month a go, I am just a little short of 20/20 vision my visual field test was sent to my gp though.

    I do feel like my eyes are tired, it takes such a long time to focus then if I have to look away I then have to refocus again.

    Thanks again for your replies x
  11. chronix

    chronix

    Messages:
    62
    Likes:
    58
    What kind of head injury did you sustain? Did you have concussion?
  12. leasam

    leasam

    Messages:
    3
    Likes:
    1
    I fell from an upside down position, hit my head, cheek, neck and shoulder.

    I was more shocked than in pain and didn't pay much attention to my head as there was no bruising only slight dizziness and pain.

    I did really hurt my shoulder and neck, I had an mri done of the cervical spine which showed "wear and tear and evidence of some damage"

    It was only when I was desperately searching for answers I came across head injuries causing olfactory damage however the medical people decided that wasn't the reason. I just don't know any more....
  13. caledonia

    caledonia

    Messages:
    2,752
    Likes:
    1,349
    Cincinnati, OH, USA
    The stuff with the chemicals sounds like multiple chemical sensitivity, which is caused by lack of glutathione, which is your body's major detoxification chemical. The first line of defense is avoidance, so you should try to make your home a safe place against chemicals. So be careful of cleaning products, markers, paints, etc. Try to eat a clean whole foods diet, nothing processed. Quitting smoking is a great step, so congratulations on that.

    The antibiotics would kill all the bacteria in your gut, including the good bacteria, so you could have an overgrowth of candida or other bad bacteria. The weight loss could be involved with this. You could do some stool testing to see what shape your gut is in, and rule that in or out.

    It sounds like you have some HPA axis involvement with the temperature regulation problems, almost fainting and so forth. So that would be hypothalamus, pitutitary, adrenals, thyroid.

    But really, you have so many wide ranging problems, and with the sinus infection as a starting point, and your mention of moldy smells, I'm wondering if you don't have some bad mold in your house. My suggestion to test for that would be to go somewhere else for a week or more and see if your symptoms don't start to clear up.

    Are there any other people or pets living in your house, and are they having problems? If they're not, it could be that you have unique genes or prior toxic exposures that would make you more susceptible to the mold.

    Another idea along the same lines is, have you done any other house renovations recently - new carpet, paint, cabinets, flooring, etc? You could do a similar test as for the mold - leave your house for a week or more and see if the symptoms don't start to clear.

    I'm also wondering about the head injury. When did that occur?
    AbbyDear likes this.
  14. brenda

    brenda Senior Member

    Messages:
    1,233
    Likes:
    589
    UK
    Look into Lyme Disease.
  15. AbbyDear

    AbbyDear

    Messages:
    88
    Likes:
    34
    usa
    my sense of smell is hightened/distorted, and most places smell moldy or chemical to me. these exposures make my head pain worse, it is mcs -> pain (and many other things). most food also makes things worse. i suspect ME, but no doctor here even knows what it is. Not sure what started it exactly, though i have some suspicions. The pain and other symptoms are present all day every day -24/7/365 for many many years, external things (including food and meds) just make things worse.

    i can not tell you what helps, cept avoidance, cause i have found nothing that helps and most everything makes things worse, including antihistamine and antidepressants, and generally with lasting effect. I believe the immune system is involved, and the brain is effected, and may be involved in over-reactive to sensory and/or under-reactive in control. I have often wondered about cortisol resistance, even before finding some small mention of it on the net (cortisol being one mechanism to tame the immune system). i do not even know if it is IgE, or histamine, mediated; i think not, but not sure since pollen and mold do make things slightly worse, but food and chemical exposure are much more extreme, and how can we be "allergic" to just about everything.

    No one (doc) has even come close to telling me what is wrong. I really do not know how anyone ever gets a diagnosis beyond having a blood test out of range, and even then it has to be like 100 times (or 1/100) out of the range before any one considers it being a problem. I really do not think this is due to a drug difficiency. I am certain this is not simply a state of mind, or laziness... the body just responds, and i was active before, like you. I will not deny that stress can make things worse, and have lasting effect, but it is not the main cause. Relaxation, vacation, etc. has little or no benefit. Being with friends, talking with friends, or trying to be involved with work or entertainment, has little or no effect. It really bothers me when docs so easily conclude some emotional issue, when this is a serious, life-destroying illness, and their mis-diagnosis and mis-treatment has so many negative effects. I am extremely fustrated.

    So, like i said, i have nothing to help, but post here to let you know you are not alone. We are all a bit different, but your description/experience does not surprise me. It is a multi-system systemic problem, and no one has a clue.
  16. k-AUS

    k-AUS

    Messages:
    50
    Likes:
    66
    australia
    I agree with brenda about the possibility of Lyme Disease. It wouldn't hurt to get this checked out.
  17. aimossy

    aimossy Senior Member

    Messages:
    1,821
    Likes:
    2,142
    NZ
    HI leasam,
    had you had any changes in your health status prior to the sinus infection. any bugs in year before the sinus stuff. any more than usual fatigue at all or bowel habit changes, tummy issues that were new? were you put on antibiotics for the sinus prob or had any in the year before?.

    sorry that might be a bit personal, don't feel you have to answer.
    I have the eye floaters and vision stuff and got hit with neurological stuff hard quickly exhaustion etc I have worked with people with ms I really thought I might have it when this all happened to me.

    its really scarey, its great your mri was clear!!

    I don't know if I can be of much help either, I was very frightened about what was happening to me and having no control over it.i had to learn to let my body do what it was doing and accept what was happening.
    Its bloody hard thing for all of us.

    work away at your docs to keep ruling things out tho.

    amitriptyline can be quite clogging on the bowel I not sure if I can remember correctly but I think its anticholinergic.
    wouldn't surprise me if that is causing headaches and that is a big dose. I get headaches if im more sluggish in the gut.
    if you do cut it back a bit you should go slowly and wean off and talk to your doc about that.

    Overall be wary trying things go slowly and try things gently and remember we are all different, what works for some may not work for others, and don't be hard on yourself about having shitty function.

    this forum has helped me a lot and people offer lots of help and support on here!

    :)
    rosie26 likes this.
  18. chronix

    chronix

    Messages:
    62
    Likes:
    58
    You might want to check out post-concussion syndrome. However, it won't be of much help because there's no definitive way to diagnose it and medical treatments aren't much better than what you've already received eg. amitriptyline. Other treatments for it include antidepressants and psychotherapy.

    It's suppose to resolve much quicker than CFS though, so if you do indeed have PCS at least you'll have a degree of certainty. But some of your symptoms developed before your head injury, right?
  19. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    Hi leasam;

    Head injuries can cause some of the symptoms you're describing. ( they did in my mother's case.)

    B12 deficiency can also cause them. ( my sense of taste and smell were very distorted, and I had vision problems too.)

    Here's a short list of signs and symptoms: http://b12awareness.org/about-b12/s...gic-psychiatric-hematologic-infants-children/

    The symptoms you are listing can be from B12 deficiency,including seizures:

    "I lost 2 stone in around 6 months, I have problems with vision, balance, memory, cognitive function, taste and smell, bladder, bowels, temperature regulation, swallowing, speech, joint and muscle stiffness and weakness, extreme fatigue, almost fainting when I stand up or stay up right for too long headaches and prob some other things I can't remember!"
    aimossy likes this.
  20. peggy-sue

    peggy-sue

    Messages:
    2,496
    Likes:
    2,869
    Scotland
    You said:-
    "I have NO idea what triggers the migraines that I actually didn't have until I started amitriptyline."

    I really think that is telling you something!


    Amitriptyline causes constipation, excessive piddling, dry mouth, and it certainly caused my blood pressure to suddenly plummet and make me faint...

    It's a chemical sledgehammer.

    I would very strongly suspect it is the cause of your migraines.
    Valentijn likes this.

See more popular forum discussions.

Share This Page