Psychosematic? Don't think so. Our situation. REVISED.

Discussion in 'Fibromyalgia Main Forum' started by Teri620, Nov 15, 2005.

  1. Teri620

    Teri620 New Member

    Today I finally figured that I would come to a door that wouldn't get slammed in my face. I am getting so darn frustrated!!!! Here's the scoop, please let me know that I am not alone in this aspect. (Nellie writing for FMS sufferer)

    Due to the feed back I have received just within the two posts I felt the need to clarify my beliefs in this illness. I do not believe that this illness is all in anyone's head. I have watched in deep concern my mother in law, Teri, go into a fog and stay in the bed for months at a time. I do what I can, when I can to try and help bring her out of these. It's terrible to watch someone you love lose everything they have worked hard to acheive.
    I cannot begin to tell you how many nights I have tucked her into bed and made sure she has gone to sleep after taking her nighty night meds (Ambien, Seroquel, Valium, Muscle Relaxer, Ultram and Topomax). If she doesn't go right to sleep she will become incoherent and in a state of deep confusion and not remember anything about it the next morning. During those times I will not let her talk to anyone on the phone as she is very uncomfortable about sounding too drugged up when in fact it's not the drugs at all.
    I have watched her eyes glaze over during the transition into a fog. I have helped as much as I can (massage her body, get OTC migraine medicines, make sure she drinks plenty of water and help her keep her balance when I know that she can barely walk.) No matter what I do I can't seem to do enough. With this I get frustrated with myself. I can't take her pain away. I can't make her family understand. I can't afford to send her to the specialists that she needs to go to (she doesn't have insurance and we are having trouble getting her on her son's insurance). I can't help her memory or give her my legs to walk.
    The medications to prevent her extreme migraines don't seem to be working. She takes Imitrex and Amerge. I am about to buy stock in this stuff that I get for her at CVS it's called Gelstart Migraine. It comes in a red box. It has 4 gel thingies that you put under your tongue and costs around 7 bucks. When she can't get into her primary physician, who sees her for free, to get a shot to relieve it this normally temporarily relieves the severity of it.)I also get her this stuff for her restless leg syndrome called legatrim. It helps with the pain and also helps put her to sleep. I have kept her from getting too deep into suicidal thoughts and try to help her laugh as much as possible.
    I just want to reiterate that I know this pain is real. Granted I can't feel it, but in every other aspect I am going though this as much as she is. Please read the above below generalization of our situation and feel free to post back your will to survive and overcome.

    My mother in law, Teri, has been suffering with FMS, MS, and Chronic Fatigue for 6 years. She had a housecleaning service for 10 years, her own apt., an awesome car and her health. Now she stays with us (her son, who is my husband, myself and our two kids 3 and 6mo. From this point will be referred to as us and we.) in the basement of her X-husbands house. She has been unemployed because she CANNOT work for at least 3 years, her 2000 mustang was wrecked so we bought her a beautiful red 2002 mustang, 5 spd, kick bootay system, rims, the works. She cannot drive it anymore. We pay the insurance on it, needs a new clutch in it right now so it is sitting, once fixed we go riding around, I am the driver just so you guys don't freak out.
    Anyways, to the point. She first applied for Social Security 2 years ago. Mind you she waited until she absolutely couldn't go on without help before applying. Now we are waiting for information about the last appeal. Meanwhile we do have state assistance for her medications, but as for doctors visits, well thank God, they have been seeing her for free. For the past year her health has been steadily declining. She is now to a point where she can barely walk, has uncontrollable shaking (need a choclate milk mixed? Just give it to her...)Memory and Speech difficulties, problems trying to urinate, constipation, Extreme migraines, sleep disorders, extreme pain throughout her entire body, body cannot support her weight after about 10-15 minutes, occasional ringing in the ears, chest pains like a heart attack (caused by Myofascial Syndrome), tingling and numbness in fingers and feet, Restless Legs and hopefully I think that's it.
    Anyway, we manage to finally save up 155$$$ so we can go to a neurologist and pain specialist that her other neurologist referred us to (He doesn't know what to give to her to help her with her pain) and then he tells us that he doesn't know what to do for her and that she needs to see a Psychosematic Medical Doctor. (At this point she laughed and said "Well now I can relax since it's all in my head" knowing perfectly well that it's not. Can a Psychosematic Dr. really help to eliminate this kind of pain???
    Suggestions and your stories would really help us to know that we are not alone in this. Thank you and God Bless!

    [This Message was Edited on 11/15/2005]
  2. Teri620

    Teri620 New Member

    I have been her main support through this entire disease. I have cried with her, nursed her, kept her from breaking her neck. She is my best friend and I am going through this with her. Forgive me if I sounded heartless, I am just frustrated because we keep getting nowhere. Her son and I are trying our hardest to make ends meet, take care and support her and put food on the table. Her son graduates with his master electrician license in May, and I am currently unemployed, but we are doing the best that we can.

    I am just so frustrated with the answers that her doctors give her. Nobody can do anything. I wish I had a few thousand dollars to send her to a specialist and a naturalist but I don't. The only thing that I can do is help her as much as I can.

    As I said, I love her and she has been my best friend since I moved out here to MD. As far as family...Son and daughter included, I am the only one trying to learn about this and go through this with her besides herself.

    If you have any doctors names or clinics in or near AA County it would be deeply appriciated. Thanks so much in advance and again I deeply apologize if I sound cold believe me I am not. I see on a daily basis what she goes through and I wouldn't wish it on the most evil person on earth.

    Truly, Nellie...
  3. abbylee

    abbylee New Member

    There is a link for doctors near the top of the page. You might find one in your area there.

    If you want to help her, walk out on any doctor who uses the word psychosomatic AFTER you tell him/her that he/she just might be a quack and could probably use some more education in the medical field.

    Did you know that most fibromyalgia patients have a sleep disorder? Just getting that diagnosis and proper medication for it (if she has one) will help her.

    Successful healthy people don't just get up one morning and decide that they are in pain and don't want to work anymore - and if they do, they quickly tire of it.

    Many of us are former successful professionals who are now homebound. We don't even go out to do fun things. We can't.

    Please check out the doctor link at the top and read some of the posts that are already here. You can search for different symptoms and/or drugs in the search bar just above the posts.

    I've been a member here for 2 or so years and I have NEVER asked a question or presented a problem that someone here hasn't already had. This group is the best support and information site on the web.

    abbylee
    [This Message was Edited on 11/15/2005]
  4. Teri620

    Teri620 New Member

    Thank you so much for the last 2 replies. I made some extra revisions as Abbylee (hope I spelled that right sorry if I didn't) pointed out that my thread might be misconstrued.

    If I come across any other OTC meds that seem to work for her I will make sure to post as they may help others.

    Thanks Again!! :eek:)
    [This Message was Edited on 11/15/2005]
  5. abbylee

    abbylee New Member

    Many of us have a sleep disorder called alpha intrusion. What this means is that either we don't go into the deep restorative (delta) sleep stage, or if we do, alpha (daytime) brain waves interfere during the delta stage. In my case, I was in delta for only 20 minutes the entire night and had alpha intrusion 38 times.

    There is a medication to treat this condition, and if she can take it, just getting the delta sleep will help her pain. Below is what we should do when we sleep. But we don't. The sleep study is really critical.

    "Fibromyalgia - Sleep Stages

    Research has identified five distinct stages of sleep. During the course of an eight hour sleep period, a person should cycle through the various sleep stages every 90 minutes or so.

    Stage 1 sleep is a transition period between wakefulness and sleep. Sometimes you may have a sudden dream onset. You may still be connected to the awakened world and could easily be aroused into wakefulness.

    From Stage 1, you will descend into Stage 2 where your breathing and heart rate will begin to slow down. During the continuous sleep cycles throughout the night, you should spend almost half your sleep time in Stage 2.

    Next comes Stage 3 and 4, which are somewhat similar. This is sometimes referred to as Delta Sleep because of the slow delta brain waves which have been recorded during this sleep stage.

    Delta sleep is a regenerative period where your body heals and repairs itself. Sometimes during illness, your body may fall immediately into Delta sleep because infection fighting antibodies are produced in greater numbers in this sleep stage.

    The first episode of Stage 3 and 4 sleep lasts from 45-90 minutes. Progressive episodes of Delta Sleep have shorter and shorter time periods as the night goes on. After several complete sleep cycles earlier in the night, your body does not re-enter stages 3 and 4 any longer, but enters the 5th Stage also called REM (rapid eye movement)

    Stage 5 is also called REM or "rapid eye movement". It is during REM periods that we dream. Your body creates chemicals that make you temporarily paralyzed. Your mind is extremely active, and your eyes are moving as if you were awake.

    In REM, your heart and breathing rate increases and becomes irregular. Your eyes move from side to side.

    As the end of your sleep period approaches, your body temperature begins to rise. Your breathing and heart rate normalizes. You may awake suddenly, perhaps remembering a dream, as you have just ended a REM period."

    Please see that she gets a sleep study. Just finding out about and doing this has reduced my pain by at least 50%, has given me more mobility, and has stopped me from falling asleep during the day (I was even falling asleep in restaurants during my meal.)

    abbylee

  6. KelB

    KelB New Member

    Hi there. What a hard time you're all living through - good on you for having the energy to still be seeking ways to help your MIL.

    The one thing that leapt out out at me was the MS. If your MIL has a formal diagnosis of MS, then many more things can be done for her than just having doctors drug her up to the eyeballs and give up on her.

    I'm no expert, but CFS does mimic the symptoms of MS. I'd have thought if you went looking for treatments to specifically ease the MS symptoms, then these might benefit the CFS as well. Might be worth looking through some MS message boards as well as this one.

    Bless you for being so caring.
    [This Message was Edited on 11/16/2005]