My wife Suffers, and I need help!!!!!!!!

Discussion in 'Fibromyalgia Main Forum' started by want2understand, Apr 29, 2009.

  1. want2understand

    want2understand New Member

    Boy, I don't even know where to start. I hope this is the right forum for this. My wife suffers from moderate to severe FM, PTSD, depression and if that weren't enough the DR's added on Bipolar. She was diognosed with FM about 6 years ago and I was very understanding and supportive at first but we have since seperated because I cannot handle the way this ailment is treating her nor can I handle the lack of any reasonable solution any DR has to at least make this something she can cope with just to be able to function on a day to day basis. Please, nobody judge me, I do not have the time or the space in this box to explain all the issues. I guess I am just looking for someone to listen and maybe there are things that she can try that the dr's have not tried yet. I love her very much and we have two beautiful daughters together which is a whole other issue. This ailment affects her abilities to provide for our children as well as even care for them sometimes. Any help or advice will be greatly appreciated.
  2. msnova74

    msnova74 New Member

    I am not going to jump on you. I think that the fact that you want more info to help her shows that you care. I am the wife that suffers and my DH tries to understand, but there are times it is very hard for him. I get that b/c i look fine.

    You did not say what your wife takes for her FM. But i will tell you my "magic" formula. Understand that this will not work for everyone and it took several years to figure it out.

    Here is what I take.

    Neurontin anti seizure up to 3200 mg daily. This helps my muscle pain and helps me sleep

    zanaflex anti spasmatic up to 24 mg daily (usually 4 or so) this helps my muscle spasms and pain

    tramadol 50-100 mg 3-4 times a day for pain

    visteril anti anexiety 25-50 mg at night for sleep

    ambien cr 12.5 mg at night for sleep

    I also take. Vit D3, Malic acid, Magnesium, and vit B12.

    also I always have a heating pad wherever I go.

    I am not functional every day, but it does allow me to work.

    It takes a lot of trial and error and such to get to the point that she is better. I hope this helps in some way.

  3. Debra49659

    Debra49659 New Member

    how you feel. FM is so unpredictable. Some days are better that others, but because day to day...heck, minute to minute pain is different it is hard to offer advise. It's so important that she has a good doctor that understands FM.

    He will have to try many, many different routes because what works for one many not work for another.

    Oh dear...I feel like I am just making this even more is hard to come to terms with this illness. And for your wife I am sure she is feeling overwhelmed and the guilt of not being the same wife and mother is not easy to handle.

    One suggestion I have is go with her to a FM support group that is close to your home. It will give both of you an avenue to share what you are dealing with and ways you might handle it.

    May God bless you both!
  4. FMsaddenedspirit

    FMsaddenedspirit New Member

    At least you are trying to understand , and to be of some help.. I commend you for that..

    Fibro is so very hard , and the chronic fatigue that goes with it... or sometimes it's the CFS that triggers the Fibro,,, what ever the case its darn hard.
    I am farley new at this myself.. I was Dx'ed about a year ago. with Fibro.. CFS, Arthritis. , Neck and back. Disc D this just goes on top of the medical problems I already have and that have caused me to already find a new career ...

    I know my husband tries to understand. he does. and he never complains about anything . unless he see's me giving in ( as he puts it. ) that's when he tells me or pushes me out the door. and says go do something . anything. just don't let it get the best of me.. ( so I guy buy more house plants LOL or garden plants )

    well its hard to say the least . I should be doing some exercise. but have no energy to do it..

    I guess what I'm really trying to says.. in a round about way.. is this DD . the worst is accepting my new limits. and by the way they change all the time.. not being able to do the grocery shopping anymore... it scares me now. the way people look at you when by the time you hit the check out you can not hold back the tears so tears just stream down your face as you pay ... or I have to leave my husband and find a seat somewhere and again can't stop the tears... from the pain.

    not being able to do what I could last month.. its hard. we feel so much guilt over this . I some times think this is worse that the pain. in some ways.

    I don't really have much for you . except .. be patient , understanding , supportative. educate yourself . I personally have learned more on this board than from my doc.. so search the web read and read. and please don't give up on her ..

    at least you are reaching out and that's good. Bless you .
  5. 3gs

    3gs New Member

    This is a very hard disease for families to deal with. It is ever changing and cruel.

    I suggest reading the posts here maybe even get wife to come here to read. A good book(a bit techincal is Encounters with the Invisible.)
    She talks about the struggle her husband has with this. There are some great videos on youtube also.

    Has she ever been tested for Lyme? vitd is low in most everyone.(key in depression also)
    I take Lortab-vitd-grapeseed extract. Rest is a major key also.

    Unfornately seeing many docs and not finding help is normal for us.

    Try to be as supportive as you can,know its tough but she is in a living nightmare. Have you thought about going to a support group?

    best of luck

  6. ladybugmandy

    ladybugmandy Member

    did your wife's FM start with a flu-like illness?
  7. LindaJones

    LindaJones New Member

    Fibromyalgia can be severely disabling.
    It is important for people with fm/cfs to do things at their own pace.
    Some people with fm/cfs hire a caregiver to help them with daily chores and to take them to doctor appointments.
    It is important to have a team of medical professionals to help the patient.
    It can be helpful to see a psychologist who specializes in helping people who are disabled.
  8. place

    place New Member

    Funny thing is, I hit my magic formula when we were in divorce. I am 75-80 back to normal. I take a bunch of meds, but I have a life now!

    I exercise, get chores done, have hobbies and work. I am not the average case but I had to find the right meds and pace myself.

    I cut out soy, corn and wheat. I also drink only bottled water, dasani, it is high in PH which changes my PH level to less acidic. Don't get me wrong, I have days when I am in a flare and need to rest all day.

    It's a matter of trial and error, till you hit your magic regimen.

    Good luck
  9. spacee

    spacee Member

    My sis-in-law's husband divorced her. They had two daughters. She had FM but got disability so he didn't care that she didn't work. She also could play tennis and do a lot of things.

    But when she was sick, she was extremely difficult to be around. They sent the two of us off for the weekend so she could regroup. (I have CFS/FM). I couldn't take it. I had nothing but admiration for the fact that he had stayed as long as he had.

    Later she was diagnosed as bipolor and with lupus. One daughter is bipolar.

    She has remarried. A man who lost his wife to cancer and it is a great marriage. Not that she didn't go through h_ll for some years. Not understood by her parents or sibs. (She moved to another state so I was not in contact with her).

    Do the best you can, that is all anyone can do.

  10. outofstep

    outofstep Member

    Here is an article re: viruses as a trigger for bipolar disorder-might be worth doing viral testing if it hasn't been done, especially w/ the Fibromyalgia diagnosis:
  11. ladybugmandy

    ladybugmandy Member

    i am bipolar too, diagnosed AFTER the CFS and mono. now i wonder if i ever had bipolar at all!!!!

    my sister has severe mental illness. she lives in an institution. her illness began when she was 6. i wonder what pathogen SHE might have!? what if she is unable to control HHV6 like me!!!??

    geez..this is all new....
  12. outofstep

    outofstep Member

    Oh I didn't know about your bipolar diagnosis-only the viral stuff! This research definitely makes that diagnosis questionable.

    I wonder how the resurgence of this theory is being received by the psychiatric community (ie. like when H. pylori was linked with peptic ulcers).

    It would be amazing if all that it took to cure these illnesses was an antiviral. Would it be possible to get your sister tested? It sounds like something that should be checked out-do you think that Dr. Lerner would be interested in investigating?

  13. Shananegans

    Shananegans New Member

    FM is hard for anyone to understand or deal with. I too understand where you are at but commend you for looking for help for her. I also went through a divorce because of being sick and either way it is a very painful experience.

    My first question for you would be what else she has been tested for? I would start there because many doctors over look things. I was originally diagnosed with FM to find out 10 years later that I actually have Celiac disease and am doing better than I have in years. If she has doctors that aren't fully supportive, that can make things even more difficult, as I have been there too. I never felt like my doctors were really listening.

    I am sorry to hear about the bipolar. That sometimes is more difficult to deal with than anything else. A good friend of mine is bipolar and I know she has a rough time when she goes into bipolar mode. I worry because she's destructive.

    Also, what is your wife trying currently? We here would be able to better help you if we know what she has already been through. This board is very helpful.

  14. ladybugmandy

    ladybugmandy Member

    i doubt dr. lerner would have time to look into the psych aspects of viral infection but i know the HHV-6 foundation is involved in some research regarding this. in fact, at the most recent HHV-6 conference, didn't that japanese researcher find an HHV-6 protein in patients with CFS as well as bipolar disorder?

    i actually suffered from depression before i got CFS/mono....i have a lot of problems in my i am not sure that the virus is involved in my case...but it is certainly very interesting.

    i know they have found a link between streptococcal infection and juvenile OCD...
  15. outofstep

    outofstep Member

    You're totally right-I forgot about that SITH-1 study. That's definitely something that researchers should follow up on (it sounds like Dr. Lerner has his hands full already). I'll put the link up in case others are interested-it's under "brain diseases":

    The CDC should be all over this-and they have blood samples from epidemic-era CFS patients. But then first they'd have to admit that HHV-6 is found in CFS.

    I hadn't heard re: strep and juvenile OCD so thanks for mentioning it-it makes a lot of sense that infections can have that kind of impact, especially on developing brains.

    Maybe the virochip research will make some of this easier to unravel?

  16. want2understand

    want2understand New Member

    I feal like a sponge, soaking all this info up. I want to thank everyone for the advice and information. I am in the process of gathering more info about what my wife is taking now and what she has taken or tried in the past. As soon as I get all that, I will repost. But in the meantime I do have several more questions.

    1. I feel that my wife could be diong more for herself or to help herself. I feel like she is just waiting for that magic pill that will just take it all away. Is this fair of me? Is this an ailment that can only be controled by medication? I want to gently nudge her in a way that helps her help herself. I think this would do wonders for her self asteem. Any suggestions?

    2.One of the biggest knock down affects of what she is giong through is very serious head-aches. In fact she is in the ER as I write this getting a shot in her heynee for the severe pain. Has anyone else experienced this and if so how have you managed it?

    3. She currently lives about 600 miles from me but she will be staying with me for about 2 weeks in the middle of next month. I would love to be able to sit her down in front of the computer and show her how she is not alone and that there are other people out there
  17. rockgor

    rockgor Well-Known Member

    Sorry to hear about the situation. Is your wife able to sit at the computer and
    read the messages herself?

    I don't know what modalities she's tried. I have CFS, depression, and various
    other things I'd just as soon not have. Anyway, my depression is less now that
    I'm taking vitamin D3 and the B12 patch. I have also benefited from meds
    (anti-depressants), therapy, hospitalization, the 12 step program Emotions
    Anonymous and the book Feeling Good by David Burns.

    I am frequently depressed and/or angry. Not much fun to spend time with.
    These DDs (darned diseases) take away not only health, but jobs, friends,
    loved ones, social life, etc.

    Hope you can find something to help. Good luck.

  18. I hope u get back with your wife.Does she want you back? I can tell you my story.My hubby got sick in 2001 I didn't believe him. I tried to push him and tell him to try harder,lose weight,get out of bed but it didn't work.

    Fast forward to 2006 I got sick. I couldn't move my body I hurt everywhere.I had fybro!! I can't believe what I put him through. I still feel guilt. I don't know what I would have done if he treated me this way when I was sicjk!

    I am not angry with you but if you begin to believe her it will make being with her easier. I hope you find your way back fo your wife. I Started searching yahoo for fybro and found strenght in knowing my hubby wasn't lieing. Searvht the message boards and u will syaty ro undersstand.
  19. ladybugmandy

    ladybugmandy Member

    want...did your wife's CFS/FM begin with a flu-like illness????
  20. want2understand

    want2understand New Member

    If I remember correctly, we did go to the dr. for something we thought was related to the flu but was lasting a very long time. One thing that has always stuck with me is they were diong all there exlusion diognoses, one of the tests they did was for ms. Before this test the severe head aches were non existant but after they got the fluid from her spine she has suffered from the bad head aches. Of all the different affects of fm the head aches are by far the worst symptom. I feel that if the dr could get these under control that everything else would be more managable. I do have her regement of meds she is currently taking as well as ones she just stopped so here they are: (sorry for the spelling on these, I am just guessing)

    seroquil for bi-polor 400mg per day, 200 in morning and 200 at night
    Cymbalta for fm 130 a day, 65 in the morning and 65 at night
    raniditine for her stomach 300mg per day all at night
    klonipin for anxiety 1mg per day .5 in the morning and .5 at night
    phenergan for nausia as needed

    when the head aches come on she gets 2 shots of torodal and a bottle full of norco

    the dr just stopped anatriptaline, robaxin and lyrica. I beleive he thinks that the other dr's and neurologists have been treating her for fm when they should have been treating her for bi-polor.

    All the meds she takes absolutely knock her out. She sleeps for about 18 hours out of a 24 hour period and that is no exageration. Is there something she can do or take to combat that? thanks everyone, I wish I could just sit here and keep reading and asking questions or chatting but I must get off to work.

[ advertisement ]