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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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son 30 what to do? his ultrasound came back fine doc thinks it is all in his head!!!!

Discussion in 'General Symptoms' started by hensue, Nov 4, 2011.

  1. justy

    justy Senior Member

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    Hi Susie, you sound very tired and i am concerned that you must look after yourself as well- you need to be strong to help him.
    My daughter was also sick for a few years when she was 15-17 and i had to look after her whilst i was very ill -she was more or less bedbound -it was awful seeing her suffer and getting no help, even from her school, it was swuch a nightmare and so stressful for us all. She is now much better and living away from home for college but not able to be a completely normal teenager -they think now she has M.E, but she has recovered a lot so i am hopeful she may make a full recovery.

    You had a couple of questions in your post that i would like to try to answer. You mention pain, it is possible to have M.E without the considerable pain you get with fibro. I do not have fibro but a diagnosis of M.E. I do get deifferent types of pain (headaches and eye pain and face pain and fluey aches) if i overdo it, but it is not a major or main feature for me.
    Also you mention the ability to recover from resting, In my experience this only happens once you are in the chronic phase not in the early days (for the severely affected they may never experinece this) When i first relapsed 3 years ago i even thought it couldnt be M.E because i was told it couldnt be if you felt ill all the time as it was a relapsing and remmiting illness. Now 3 years later i do have good days and bad days and i can achieve a higher level of frunctioning and less symptoms if i rest a lot. But if you are not pacing at all (just collapsing and sleeping all day is not pacing) Then it is quite possible to feel horrendously ill all the time and for rest to offer no relief, infact one of the criteria for a diagnosis of M.E is that it not be substantailly alleviated by rest.
    I do hope you had some sleep last night and are feeling O.K today.
    Take care, Justy.x
     
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  2. taniaaust1

    taniaaust1

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    All that stuff one hears being said about the sooner one is diagnosed and treated the more chance they will be cured ... I think is basically crap and probably just a spin coming from government agencies trivialising our illness and making it sound as their treatments eg CBT and GET work. I actually dont think there is any studies at all showing that sooner diagnoses leads to more cures. (so many myths of ME/CFS out there).

    What thou can make one worst before diagnoses is if others try to convince the person they arent really sick or if the person is struggling to accept and dont believe their own illness is really real (due to the ME/CFS brainwashing out there or just not wanting to believe they are vulerable to illness). In this case a person struggling to accept how sick they are.. may be over pushing and trying to push throu the illness which really dont work and in this case can make their conditions far worst.

    As long as your son watches out for himself and tries to make sure he's resting when he needs too, he shouldnt be putting himself into any danger from not being diagnosed yet if he does have ME/CFS.
     
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  3. taniaaust1

    taniaaust1

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    I agree with all that justy said to you.

    Dr Charles Lapp is a world ME/CFS expert and known all over.

    Sounds like he's feeling quite desperate due to his symptoms and also sounds like he may have some situational depression over it all which is completely understandable.

    A good psychologist or counsellor could help him some by just being there to listen to him and emotionally support him but ones who truely understand our illness are extremely hard to find (Im lucky, I have a great one who I go to and express all my anger over doctors and other stuff too etc). In the physical state he's currently in thou just going to see one would probably be pushing his body too much too, so at this point wouldnt even recommend him in attempting to find a good one of those.

    Something for his depression his real situation is causing thou may be useful (thou SSRIs may be out of the question due to many of us react poorly to those).

    You probably wont and its not even worth the trouble of trying to educate them unless you yourself have a lot of energy to try to do so. Im to the point nowdays after trying to educate doctors on this illness for past 14 years yet never had a success with that.. Im giving up on doing it.

    I think I can understand your confusion (my nanna has confusion like that too) thou in your case it sounds like you do also have CFS too seeing you do get flu symptoms too so possibly it is a little easier for you to end up understanding him then some.

    FM and CFS are completely different illnesses thou of cause can coexist. I used to have both FM and ME but nowdays I just have ME (which is still severe).

    My nanna she only has FM and cant at all understand the ME i have.. she dont at all understand the exhaustion of ME etc nor could she understand when I used to get postexertional symptoms. Cause she gets tired with her FM, in her head she just thinks that is how I myself feel but it is no where like her... then she ended up shocked when she wore me out as she made me take her shopping, she didnt believe I wouldnt be able to do it and I collapsed and lost energy to the point where I couldnt even talk at all only make noises.

    Even after that happened and an ambulance was almost called, she still put it down to "oh you must of just been sick that day as you arent usually like that" .. she just didnt understand at all that that is what always happens to me if I push myself and what an effort everything is. Try to keep reminding yourself that your son may be experiencing it VERY DIFFERENT to how you are as we all have different dominant symptoms. We also all have it to various severities. The less severe really often dont (thou they often think they do) understand the more severe and it can be harder for them to understand that they are missing what the other experiences.

    In my early years of this illness.. I could do nothing. I was stuck in bed for 9mths with a 10year old daughter caring for me, doing the housework and taking care of my younger daughter. This illness can be so bad that just feeding oneself with a fork can be over doing it. I spent a lot of time in like a comatose state sleeping over 23 hrs per day, I once slept for 3 days straight without being able to wake up and eat or drink. I even lost my ability to talk.

    It all depends of the persons severity. Some end up having to be tube fed (which should of been happening to me.. I truely could of died). This illness can vary in severity so much and you may be thinking that your son is far weller and able then he actually is. Getting throu the day could be almost truely or become impossible to him. He may be to the point of really needing care so hence then desperation and depression will start coming in if that isnt a possiblity. The more he pushes himself.. the sicker he could become.

    sorry if im sounding dismal but it dont sound as if you know how bad this illness can be.. and if your son is a very bad case he needs someone to understand this.

    You also need to look after yourself thou too.. it sounds as if your son is making you very anxious and that could end up making your own health go down. If you need too.. seek some supportive counselling for yourself as you need to be strong for your son.

    Can his children learn to do more and pick up after themselves and help with housework? It really sounds as if he shouldnt be doing this. Even young children can do things to help if one is very sick (as I said, in my own case my 10 year old had to become my carer as I was unable to care for either of my children).

    :( it does sound like he needs counseling. A counsellor who supports with those who have chronic severe illnesses may be the go (those all have many of same fears) IF he can go without making himself too ill. Maybe there is one who can do a counselling session over the telephone?

    any ME specialist not just will diagnose ME but also just as importantly knows all the diseases which look similar so will do tests and rule more things out.

    I know that was to another but I'd like to say I got ME when I was 25/26 years old and at collage so never even got to finish that. Ive never experienced what it is like to be properly employed, married etc etc. (Im 41 now)

    I'd like to say that there are various ways of living.. one can still live with a disability, it is just we live differently. We learn to enjoy the simple things in life instead. I enjoy chats in forums, i enjoy watching DVDS, i still can listen to music or enjoy a hot bath. You son can still live but yes he may have a life shift. It thou dont mean that he is going to have a truely horrid life (thou my life is very difficult as im mostly homebound, I dont see it as horrid and I still do enjoy life)... and since your son dont have the FM side of things.. its even easier to enjoy life if there isnt pain (bedridden and in pain sucks a lot more then just bedridden).

    Try not to stress over it all as it will wear you down. Maybe try to think of some ideas of things to say to him when he rings crying.. eg why dont you go and have a nice bath (IF they dont make him worst).. or why dont you lie in the garden for a while and enjoy the sun etc.
    He needs to learn to focus on things which can be enjoyable and learn to find the enjoyment in the simple things so he can realise he still can have a life. (his wife may just have to start doing more or he may have to get used to a messier house, yeah i know its not pleasant but that is sometimes just how things have to be to be taking care of ourself and not doing too much). What is more important? having a very tidy house or his health?

    My own dishes havent been all done in 4 weeks (I have dirty pans all over my kitchen floor due to no room elsewhere there cause of other dirty dishes) and I really dont like mess either, if dwelled on it, it would really upset me and annoy me. (I have my boyfriend visiting tomorrow, hopefully this week he'll have time to do them for me).
    Its a big learning experience and big adjustments to make.

    I like the Serenity Prayer

    "God grant me the serenity
    to accept the things I cannot change;
    courage to change the things I can;
    and wisdom to know the difference.

    Living one day at a time;
    Enjoying one moment at a time;
    Accepting hardships as the pathway to peace; "
     
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  4. kurt

    kurt Senior Member

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    hensue,
    Just want to reiterate something tania said. Guys seem to often push themselves harder, maybe something to do with the male ego, I don't know. But there is a good chance your son is worse off than appears to you. This does not mean to panic, because he may actually be fairly stable, medically speaking. Just very important to be sympathetic to what he says. In my experience, ME/CFS patients do not usually exaggerate their low energy level, if anything we seem to often over-state how well we are doing since telling the hard truth makes others feel really bad, particularly if they care about us. Your son is lucky to have a mom who understands, believe it or not that is not always the case... Anyway, if he is saying he needs to be taken somewhere to get well, then probably he does need some type of intervention. But I would take some time to figure out what that intervention should be. Have some long conversations, listen to what he says. The sad truth is that there IS nowhere to take him that will lead to guaranteed health improvement, if there were some type of treatment that worked consistently I can assure you we would not be talking here on this forum, we would do whatever it took to get to that therapy. There WILL be answers eventually, I am convinced of that, there is positive momentum in the research right now, but until that happens the best thing really is to learn to cope, focus on wellness habits, make the necessary life changes, and visit a sympathetic doctor now and then to rule out other problems that can also emerge over the long duration of this illness.

    Regarding an intervention, sounds like your son desperately needs some coping skills. Maybe he is not ready to discuss with other patients how to cope, but time will work on that, it always does with ME/CFS. Eventually we seem to go through a type of curriculum in our own ME/CFS school of hard knocks. I am regularly amazed to read other patients journeys here and find how similar they are to my own, or my daughter's story. There is a logical path to stabilizing and improving health, and if he searches for that path he will eventually find it. The most important things he can do right now is probably to reduce his stress levels and work on digestive health. Reducing stress might take some creativity, and a change of focus on his part. Much of our stress comes from inner conflict, lack of acceptance of what is, etc. There is counseling but most counselors do not understand ME/CFS and some can be harmful. However some self-help stress reduction programs are very good.
     
  5. justy

    justy Senior Member

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    Hi Susie, i hope you are doing o.k today?
    Tania and Kurt both speak a lot of sense. One thing that struck me this morning, reading through these posts, is that whatever he has wrong with him; be it M.E/CFS anxiety, depression or something else, he is clearly not coping and needs to slow down, learn some coping strategies and take stock of his situation. I am not saying it is all in his head (been there my self so i know how awful that feeling is) but even if it where he still needs to try to calm the anxiety down (meds, diet, meditation, relaxation, rest) which is what he would be doing if it where M.E/CFS. ( i hope these ramblings make sense)
    Before i was diagnosed i felt like i was losing my mind and felkt like i was going to die but i pushed on harder and harder because i was told it wasnt a real illness. Once i got my mito results back from Dr Myhill i realised that i was much sicker than even i had realised as i was able to push with adrenaline (this was causing a lot of the anxiety) She uses the test results to give you a score based on Dr Bells ability scale. I had estimated my score would be about 60 (100 is well. 60 is mildly affected) but in reality it was 30! which put me in the moderate/severe category. So it is quite possible to be more ill than you realise -although i did know something was very wrong.
    Just some more of my thoughts to try and help you through. I do hope he finds a way to cope with it all.
    Take care, Justyx.
     
  6. markmc20001

    markmc20001 Guest

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    Hey susie.

    Your son is disabled. He needs to recognize that. If he is pushing it too hard trying to function he will end up worse. The best thing he could do is go on disability first.

    To do this, maybe have him see a psyhocologist for a few rounds. Depression can get him on SSDI quicker than ME/CFS. ME/CFS has essentially no tests available. We all know here that it is not derpression, but a real physical illness. Acknowledge that and believe him. half the stress from this disease comes from no good tests and it being an invisable illness.

    Once on SSDI, then he can focus on getting a doc for all the other crap that comes with this disease.

    Your son needs to get off the stress and overexertion to tread mill fast.
     
  7. cyndyd

    cyndyd

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    Hi Sue, I have read every post here. I don't see anywhere if your son has ever had a vitamin screen testing done. I am vitamin B12 deficient. This deficiency affected my whole body head to toe's. This is a link to the thread on this same site. My story and symptom's are on this thread. ( Wrong Diagnosis Site - Fredd's Protocol.) There is also a post there for someone new to this condition to read. It has a huge symptom's list. You and your son should read this together, and see where he might fit in there.

    I know exactly how he must feel, as I was not diagnosed for many years. The anxiety that goes along with no answer's really grate's on the mind. Please just check it out. What has he got to lose?

    cyndyd
     
  8. cyndyd

    cyndyd

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    This is the link to the above thread.
    Detox: Methylation\B12\Glutathione\Chelation\...
    (28 Viewing)
    Are derangements in the detoxification mechanisms at the heart of ME/CFS? Hash that subject out here.
     
  9. Ocean

    Ocean Senior Member

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    I understand wanting to see CFS specialists but can't you also go to a regular rheumatlogist or two? I had 2 of them diagnose me and run all the tests to rule out other conditions. It's a place to start at least without having to travel and pay a lot. Sorry if you're already discussed this, I haven't read your whole story. You could even do it while waiting for other appointments, or do that and then based on what they find or don't find follow up with those who are more specialized? Good luck, I feel for both of you. Him for his sickness and you for your worry and concern for him. Hope some answers are found soon.
     

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