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Severe symptoms

Discussion in 'General Symptoms' started by Oredogg, Apr 8, 2014.

  1. Oredogg

    Oredogg

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    My wife is severely ill. Her symptoms seem to match best with CFS/ME, had a lot of negative lab tests several years back. She has gotten progressively more ill and bed ridden in the past 2-3 years. She is now in bed pretty much 24 hours a day. She gets up to go pee sometimes, or will pee in a bucket next to bed. She feels ill and fatigued all the time. All her meals have to be prepared for her, as she is too weak to do it herself. She cannot tolerate much noise, light or emotional stimulation. I can barely talk to her anymore about anything. She is sensitive to almost every medication known to man. Nothing seems to make her better. She is too weak to get in a car and go see a doctor. We've hired a naturopath to do housecalls and sometimes blood draws.

    Is there anyone that has CFS/ME symptoms like this? This severe? I cannot figure out what is going on, its so heartbreaking. I feel like my wife is slowly dying and there isnt anything I can do to help her. It would be nice to know if CFS can be this severe or that we are dealing with something like MS, neurodegenerative disease, etc.

    Thank you.
  2. SOC

    SOC Moderator and Senior Member

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    I am concerned that she is that ill and not seeing a knowledgeable doctor. Your naturopath should be able to diagnose/eliminate MS and other neurodegenerative diseases. If he can't, you need to find another doctor immediately. Someone as ill as your wife should be under that care of a capable doctor. If she has ME/CFS, she really needs to be under the care of an ME/CFS specialist.

    Sadly, yes, there are people with ME/CFS who are that ill and have symptoms like your wife's.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, Oredogg,

    It can be this severe. Your wife needs tests that might confirm ME/CFS or point in another direction. Maybe you could let us know where you are located those near you could suggest resources?

    So sorry you are both going through this. There are others here in the same situation as your wife. They are connecting to the forum using a tablet or phone with a forum style for low vision (there are two new choices for those bothered by light and contrast).

    Have a look--perhaps your wife could manage one of them: http://forums.phoenixrising.me/index.php?threads/introducing-two-new-styles.29474/

    As @SOC said, your wife would really benefit from some specialized medical care.

    Best wishes,
    Sushi
    justy, Wayne, merylg and 1 other person like this.
  4. Oredogg

    Oredogg

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    We are in Corvallis, OR
  5. tdog333

    tdog333 Senior Member

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    What other symptoms does she have besides malaise and fatigue, any specific stuff? Muscle Twitching, bloating, intestinal pain, swollen lymphs, constipation.. etc
  6. barbc56

    barbc56 Senior Member

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    Welcome to the forum. So sorry about your wife. PR has a lot of resourses that are helpful.

    I may have misread your post but has your wife had any testing since two years ago? There are some lab tests that need to be checked regularly.

    I am surprised your doctor hasn't put her in the hospital. What about a second opinion?

    Your wife is going through a hell I wouldn't wish for anyone. Thank goodness you are there for her and being proactive. Don't forget to also take care of yourself.

    Barb
    ggingues likes this.
  7. Cheesus

    Cheesus Senior Member

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    I strongly second this. You must love your wife very much and she is extremely lucky to have you. It is very important for both of you that you ensure you are feeding your emotional and physical wellbeing. I know what can happen when the non-sick party in a relationship begins to buckle under the load and it can be devastating.
    justy likes this.
  8. taniaaust1

    taniaaust1 Senior Member

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    Yes ME can cause your wifes state or do even worst, it can even kill in rare cases. The good thing about this disease (if there is one) is that its unpredictable so she could get much better too. I was in a state worst then what you describe your wife to currently be in for 9mths, I ended up getting to the point where not only did I have the symptoms you described her with having, but many more severe ones.. eg I was comatose at times for up to 3 days at a time, neither eatting, drinking or going to the loo.. I wouldnt wake up. I also had bouts of paralyses, where I couldnt even move my fingers or my body. When I wasnt paralysed or comatose, I couldnt sit up to eat and I couldnt even hold a fork as my hands used to shake so badly so I'd have to eat with my hands.


    At my very sickest I was only able to say single words if that.. and used to have to use my own version of sign language eg point to my mouth if I wanted food. I lost ability not only to speak but also to compehend language for a time so couldnt understand others (language to me was a foreign tongue). Like your wife.. I couldnt handle light (my room had to be kept dark) and I couldnt handle sound (it would affect brain badly and was a nightmare for me.. too much noise eg a lawnmower going way in the distance could send me into seizure like episodes, my neurological system cant handle it). I couldnt listen to music, I couldnt watch TV, the movement was too much for my brain.

    Five? years later, after slow improvement, I ended up having a rare full remission from ME for a time (but sadly got this illness back and now are having to use a wheelchair like many of us do). Ive got or had over 90 different symptoms with this aweful disease..

    A few severe symptoms which are found in severe ME patients http://www.ahmf.org/package_severity.html (ME gave me a prolapsed bowel and I have severe autonomic issues due to it, I can go unconscious due to its complications. I can have seizures. I can be left not knowing who family members are).

    There is some very well known severe ME cases which didnt have as good outcomes as my case has. You will see from these that it is essential to have a doctor involved who understands the seriousness of this illness. A not knowledgable doctor can be a real risk for a severe ME person!.
    http://www.investinme.org/Article-050 Sophia Wilson 01.htm
    http://www.ahmf.org/aboutus.html

    You need to try to find your wife a proper ME specialist who has experience in dealing with severe ME especially as she may get even worst. Unfortunately I can count on my two hands the number of these specialists around the world. She's obviously not well enough to take a plane trip anywhere (for her to try to do so in her current state would be dangerous) but maybe one of these will oversee her case and work with the naturopath or a local GP to try to help your wife.

    As long as she has been correctly diagnosed, there is much good advice in these forums or if you ask for her for advice on specific issues she has.. Im sure one of us here will be able to offer some suggestions which could be tried.

    This is the norm for severe ME. Even now I often miss meals cause Im too ill to do them. I get some government paid home support time which is supposed to cover doing some of my meals but it doesnt.
    .............

    Thou I dont agree with everything said on the website, the Hummingbirds ME site is done by one who has severe ME and is a fairly good site, so you may find some good info there too. http://www.hfme.org/themesymptomlist.htm[/quote]
    Last edited: Apr 9, 2014
  9. minkeygirl

    minkeygirl Senior Member

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    Isn't there a CFS doc in Seattle? There are some in Northern CA. I know that is far for you but you may have to travel if you can't get some help.

    I see a NP and she is really on top of things so i would think yours can help. (sorry I can't read all everyone said so if this is duplicates sorry).

    I would make a list of what labs you want done and ask the NP to run them. Sometimes you have to take the bull by the horns and be pushy about what you want.

    Good luck.
  10. SOC

    SOC Moderator and Senior Member

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    @Oredogg,
    I've slept on this conversation, and had it in my mind most of the rest of the time since I first read it. Several ideas have come to mind as I remembered our previous conversations.

    1) Since you are a physician, you are much better placed to help your wife than many other spouses. You have background medical knowledge and medical contacts. What you probably don't have is specific medical knowledge about ME/CFS. For that reason, I strongly suggest that you read the ME/CFS Primer for Clinical Practitioners.

    It contains information about etiology and pathophysiology. There is a section on Clinical Diagnosis including differential diagnosis and a Diagnostic Worksheet which you could use in collaboration with your wife's NP to find out if she has ME/CFS or a different treatable condition with similar symptoms.

    You can follow that with suggestions from the Management/Treatment section. There are a number of treatments that could improve your wife's quality of life described in that section. If your NP won't try them, use your medical connections to find a doctor who will. (I don't know the rules in medicine, but I'm assuming it's unethical for you to treat your wife yourself.)

    You will want to pay particular attention Section 6:1 Low Functioning Patients to learn about special considerations for that subgroup of patients.

    IMO, the ME/CFS Primer is weak in the area of immune dysfunction, opportunistic infections and reactivation of latent infections. You might want to seek out other sources of information on those topics. Dr Jose Montoya at Standford University has done work in that area. You might also want to do some reading at the HHV6 Foundation website.

    2) Because you have medical connections, it will probably be easier for your wife to get appropriate immune testing than it is for most patients. Identifying and addressing immune dysfunction in ME/CFS might greatly improve your wife's condition.

    The most common immune dysfunction in ME/CFS is low NK cell function, not number, although some patients have low NK cell number also. This is not a common test, but you can have it done. I've had mine done at the Institute of Neuroimmune Medicine at NOVA Southeastern University, but I know there's a couple of other places that do it. You local lab will probably know. The blood needs to be overnight shipped, so you need to get everything carefully organized before you start. The test itself takes several weeks, so don't expect fast answers.

    Another known, but less common immune dysfunction is low cytotoxic T-cells (CD8+). That test is easier to come by. There's no treatment I know of for that, but it will support insurance payment for abx and antivirals if she needs them.

    It's probably also worth having IgM, IgA, IgE, IgG and IgG subclasses done to check for deficiencies there.

    3) I understand and sympathize that your wife doesn't want to leave her bed to go to the lab or doctor. Nevertheless, she may need to do so at least once in order to get treatment to improve her condition.

    Careful planning can reduce the impact of the trip on her health. I have traveled by wheelchair with headphones in and eyes closed to minimize exertion and stimuli. At my worst, I traveled by car lying down the entire trip while my husband drove. One of my ME/CFS specialists had patients arriving at his office on a gurney. It is possible, even for severe patients to get to the lab or doctor, it's just not easy.

    Yes, it's more effort than lying in bed, but worth it to get improvement in her condition. The trick is to not waste her energy taking her to doctors who don't know anything about ME/CFS and so won't do the proper tests, diagnoses, or treatments.

    If you plan carefully, using the ME/CFS Primer (and perhaps some other resources) as your guide, you can take her to the lab one time and get all the important tests in one visit.

    4) Since you are a physician, it might be possible (once you educate yourself about the illness so you can talk intelligently on the subject) to have a physician-to-physician phone consultation with one of the top specialists to ask specific questions. The average person can't do that, but physicians give special consideration to other physicians under the guise of "professional consultation".

    It is very possible that your wife's quality of life can be significantly improved with appropriate treatment. I'm not suggesting a cure or a return to normal functioning is certain, but big improvement is possible from her current dire situation. I was bedbound when I started. Now I'm largely housebound but able to work a few hours a day at a very easy job, do a little light housework, and make simple meals. That is a huge quality of life improvement for both me and my husband.

    There is hope. You just need to get educated about the illness and start appropriate treatment for your wife.
    Last edited: Apr 9, 2014
    justy and ggingues like this.
  11. barbc56

    barbc56 Senior Member

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    Did I miss something? The OP is a physician? That at least relieves some of my concerns.

    Barb
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    So sorry to hear about your wife's condition, I hope it gets better soon.

    GG
  13. taniaaust1

    taniaaust1 Senior Member

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    If she does get taken out of the house to go to a doctor.. please ensure it has been previously arranged that she will have somewhere to lay down while waiting for the appointment.

    Im not as bad now as she sounds currently and that is often a necessarity for me... I often will have a bad collapse just sitting waiting for an appointment otherwise, (then the doctors who were going to have the appointment with me just then want to ring and ambulance..so there goes ones appointment!!.. I then get rushed to hospital in ambulance where Im then just told there is nothing which can be done for ME and are back to square one.. this has happened to me at least three times now.. I've collapsed in waiting rooms, due to not having somewhere to lay while waiting to be seen by a doctor.. each time something like that occurs, its terrible on my ME and has put me at a huge risk.

    Chemicals of peoples perfumes can be quite bad for a ME patient so some of us also need to be given a room by ourselves to wait in or our conditions can also decline from that. A normal waiting room isnt the place for a very sick ME person to be. The trip itself, if its a car trip in which she can lay, is usually far less of an issue then the wait for the appointment once one gets there..thou in the very seizure the trip itself eg the bumps while travelling can cause not just ME worsening but can cause seizures, the road bumps for some, the being shaken around can cause excushating pain..... (and any crash caused by an appointment, may or may not be recoverable from.. not all ME patients are able to be helped. Its russian roulette on each case and what dr you get).

    Only she can judge what will be safe for her. A ME patient should never be pressured into doing more then she feels she is safe to do.
    Last edited: Apr 9, 2014
  14. SOC

    SOC Moderator and Senior Member

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    It's not always necessary to wait in the waiting room. Often, the patient can wait in the car or another safe(r) place until time to be called back to see the doctor. It's all about thinking ahead and planning rather than putting yourself in untenable positions and then trying to sort it out in the moment. Key words: think and plan.
    taniaaust1 likes this.

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