1. I really could use some prayer... I haven't been able to eat anything for almost 2 days now and have been especially weak with my symptoms getting worse...

    To make matters worse, my husband hurt my neck when he was trying to help me sit up so I could try to eat a little something... Now my neck and back are killing me and I have a migraine that was brought on by this neck injury. Instead of putting his arm around my back, he put it around my neck, and all the force of lifting my body was put on my neck, which I have problems with already (2 disintegrating discs in my neck, along with chiari malformation where skull and neck come together)... And to make matters even worse, my husband just got angry and frustrated because he hurt me, which only makes matters worse...

    And I'm very concerned about the impact of all this on my 11 year old son... I love him so much and can't bear the thought of my illness (and his dad's ADD) bringing him distress...

    I feel like I'm at the end of my rope right now... In so much pain and so weak... things going from bad to worse lately...Prayers are appreciated...

    Blessings,
    Shel
    [This Message was Edited on 03/28/2013]
  2. sunflowergirl

    sunflowergirl Active Member

    As you know I've got cervical troubles. The best thing I have to help with the pain are those 4 x l0 gel packs which I keep in the freezer. I actually bought 2 more today so that makes l0. I slip it into a black knee hi which I have sewn a piece of velcro onto.....very stylish when I go outside in front to check how my garden is growing! I also use a heated rice sock but personally I find that the cold takes the pain away much better. I also have several very large freezer gel packs for my back. CVS makes a large one and runs about $20.

    I'm sure your husband wants to help but just doesn't know how. And when we're in terrible pain it's hard to be patient with someone. And probably because of his ADD it's hard for him to admit that he hurt you.

    You really do need to eat some protein. Cottage Cheese, yogurt, a scrambled egg? If you have a blender even your son could whip you up a smoothie. I use a ripe banana or some other fresh ripe fruit, some protein powder, a little milk, a little plain yogurt or even cottage cheese, a little sugar if you want and maybe a squeeze of a fresh lemon. You could drink that for some energy.
  3. ... We have so much in common, don't we? It's always such a blessing to have others who understand what we're dealing with... So thank you, Sunflowergirl for caring... And for your friendship. It means more than I can say...

    I do have a large ice pack in my freezer that I got from my chiro years ago... So I will def try that... I have a rice sock too... Maybe if I switch back and forth between the two?

    And you're very insightful about my husband's reaction... I think you are right... He gets frustrated very easily... I guess from his ADD?

    I will try the smoothie idea... I used to make those years ago, but somehow as my condition progressed, it slowly went by the wayside... I rarely have energy for any kind of food prep... Even getting out the blender. I need to show my son how to do that... Good idea...

    And I did just finally get an egg and one piece of wheat-free toast in me, with my husband's help. I do appreciate those kind of things (help) so much...

    Thanks again for your support and prayers, Sunflowergirl... I will keep you in my prayers as well...

    Blessings and Gentle Hugs,
    Shel
  4. mrstyedawg

    mrstyedawg Member

    I haven't been on this site for probably six years.....decided to come on here to try and find a doctor and came across your post.

    A little about myself.....I was diagnosed with chronic fatigue syndrome at the age of 19...I am 48 years old. My how the time does fly! I never dreamed that I would still be fighting this battle 29 years later.

    I will be sending up a prayer to Jesus for you......I know how you feel, the guilt and with your child. My children are now grown.....and I too didn't want them to see me suffer, being a mom is even harder when you are constantly sick.

    Just as long as your son knows that his mom and dad love him he will be just fine. I have two of the greatest children in the world.

    I was raised with a very sick mom also, and I think that it made be more compassionate and caring, because I had to be there for her so much.

    I, also, have neck problems.....Had surgery for cervical spinal stenosis...that did wonders for my breathing difficulties......I know that pain and despair that this illness brings and the Lord is OUR strength... Just keep praying..

    God Bless You
    Your friend,
    Andrea
  5. sunflowergirl

    sunflowergirl Active Member

    Come back here often. I used to come here years ago....maybe l0 or more and then when they dropped the chit chat board things kinda fell out of favor. I've been here maybe a year or so now.

    We need the support of others, what they go thru, and also to "pump" up each other. I wish more people would vocally support others. It doesn't take much effort to give a "you can do it" type post, just to let others know they understand the suffering. It makes such a difference for the receiver and ALSO for the giver.

    I also had an "ailing mother" and I remember when I was l0 she got pneumonia. She was told to stay in bed for a month (that was back in the 50s) and I was suddenly in charge of everything. She would tell me what to fix for dinner, giving me instruction on how to do something from her bed. I learned back then that I was a nuturing type person and I would rather take care of others and forget myself.

    I've got cervical stenosis also. I started neck traction yesterday....OMG....painful and scary. When did you have your surgery and how are you now?



  6. mrstyedawg

    mrstyedawg Member

    I live in WV and about 11 years ago, there was a program on 20/20 regarding CFS. A doctor in Chicago, IL thought that this was caused by cervical spinal stenosis and/or chiari malformation.......I flew down and was evaluated by him and was surprised to learn that I had spinal stenosis.....

    I had the surgery, which was supposed to have only lasted for four hours and ended up lasting nine. The doctor found that my stenosis was much worse than what he had originally thought. I now have 10 bolts and screws (five on each side) where he took out bone. My spinal fluid wasn't traveling freely and after he opened it up...my breathing improved, numbness on my nose, and the tingling in my gums improved.

    I have limited range of motion in my neck, and the surgery was horribly painful.....but I am thankful for the relief I did get.......However, it did not cure my chronic fatigue syndrome.

    I am constantly either saying okay, i am sick and am not wasting anymore time and money trying to find relief, or getting stubborn and spending hours trying to find some treatment........I have spent tens of thousands of dollars on doctors over the years......The majority think it is all in my head....even today.

    But, I am the type of person that just cannot give up.

    Do you have CFS or Fibro? And how long have you been sick?

    Andrea


    [This Message was Edited on 03/28/2013]
  7. sunflowergirl

    sunflowergirl Active Member

    But looking back I think I displayed symptoms even in the teens. Some days the fatigue is AWFUL and other days it's pain. I try to stay busy and keep moving.

    I'm so sorry you went thru all that pain and still not well. But you now have less pain?
  8. ... I can't thank you enough for your kind post, prayers and encouragement... As sunflowergirl mentioned, it DOES make such a difference when we're struggling...

    And thank you for sharing your story! I'm so glad you have come back to this board! I only discovered this board last July... and it has been such a blessing, for the most part. Its just hard when you establish friendships then some of the ones you were closest to stop coming to the board much and you lose touch...

    I'm sorry to hear of what all you've had to suffer over the last 29 years! I too have had health issues since age 11 and I am close to your age... I am 49. I was diagnosed with fibro around 1995 and was struck down with CFIDS after a yearlong struggle with mono starting in Jan.2004... BUT didn't get the diagnosis of CFIDS till August of 2010! So I struggled and pushed myself relentlessy for 6 years not knowing WHAT was wrong with me, as I went from doctor to doctor looking for answers... and tried everything under the sun to help turn my health around...

    Like you, we have spent thousands of dollars over the years trying different treatments. And have traveled countless miles in the hopes that THIS might finally be the thing to turn my health around. ( I can't tell you how many traditional docs wanted to attribute all my symptoms to "depression"... talk about a "wastebasket" diagnosis?! People who are clinically depressed have no motivation to be on the internet constantly looking for answers or thinking about all the things they WISH their body would let them do!)

    I am very intersted in the surgery you had since I was diagnosed with chiari malformation about 4 years ago, and traveled a long distance months later to the Mayo Clinic in the hopes that they could advise whether I needed the very dangerous surgery. The trip wound up being for nothing, as I left with no more answers than when I got there.

    Thank you so much too, Andrea and sunflowergirl, for sharing about your moms too... that def has blessed me as well. My youngest daughter, who is in college, is studying to become a nurse and she tells me its because of what she's seen me go through. She is a very compassionate person with a heart of gold. I just hate having to put them through any anxiety when they're growing up, as my youngest son is going through now.

    Sadly, my daughter has told me that when she was younger, and when this illness first sidelined me, she would come into my bedroom while I was sleeping to watch and see if I was still breathing. Breaks my heart that my kids were constantly worried that I could die at any time... but I have to keep reminding myself that God can use things, even like that, to deepen our souls and make us stronger. I just was always the one to care for them and watch over them like a hawk... I'm not comfortable with it being the other way around! Shouldn't have to be this way...

    But thanks again for sharing and caring so much, andrea and Sunflowergirl. God bless you both! And Andrea, I hope you stick around... I appreciate your friendship! And I will be praying for you as well...

    Blessings and Gentle Hugs,
    Shel


    [This Message was Edited on 03/29/2013]
  9. sunflowergirl

    sunflowergirl Active Member

    I was always afraid she would die and would do the same thing from an early age. Peek in and see if she was breathing. When I had a full time job...around 2l....if she didn't answer the phone I would drive home at lunch time to check on her and usually she was out shopping. I learned "anxiety" at an early age.



  10. ... I hate you had to go through that too :-( and it does concern me that both my youngest children have anxiety issues... I feel so guilty... even though I have/had no control over this DD...

    I was such a "take charge" person before this illness turned my life upside down... My kids always knew they could count on me... and then CFS/ME pulled the rug out from under me... and everything suddenly changed... still breaks my heart...

    I have tried to still make the best of a bad situation... even playing games with my children in my bed whenever I was bed bound... but as the years go by, this horrid disease seems to be progressing and I'm able to function less and less... scares me to death sometimes :-(
  11. mrstyedawg

    mrstyedawg Member

    You sound like a wonderful mom.......I know how it feels to want to take away anything painful that comes our children's way....but I have learned to turn everything that I cannot help them with over to the Lord. Having faith and trust in him has helped me tremedously through the years.

    I am sure that like me, when you are around your family you put on a brave front, but when I am alone I tell Jesus all about it. In 2006 I went to a CFS/Fibro clinic in pittsburg, pa......the docotor ran multiple testing on me, not just the normal blood test most doctors do, and tested positive for multiple viruses.

    Of course, they did not take insurance......and it became to tiresome and expensive for me to travel, so I just quit going......

    My brother became a physicians assistant about four years ago, and they are not even teaching them in medical school that CFS is real.....They are thank God acknowledging Fibro, which I do not have.

    I am now researching this myself and with the help from my brother am trying to get some testing done. I am at the moment having the ISAC panel test done on me. I just ran across the article from Dr. Berg.

    Had my blood drawn a couple of weeks ago....the blood has to make it to phonex, arizona within a 24 hour time period....and of course, mine did not make it there on time......repeated it this past Tuesday....just praying it gets there on time.....

    It sure feels good to be able to share with someone that is going through what I have been going through.

    So sorry that you are completely bedridden......I spend about 18 hours a day in bed, on days that I have to go out, it takes every bit of willpower I have to do this......My loved ones think they understand, but unless you have been there yourself, there is no way to fully understand the severity of this illness.

    Good bless you this wonderful easter season!
  12. mrstyedawg

    mrstyedawg Member

    My main problem throughout the years has been the CFS......such a silly name for such a multisymptom problem......I have not been diagnosed with Fibro, but I do experience some pain, it has not gotten so bad that I need medication for yet.

    Hopefully, you are getting help for your pain.......My exhaustion combined with the breathing difficulties are my worse symptoms.

    Hope you have a wonderful easter season
    Andrea
  13. Saoirse3

    Saoirse3 Member

    You have always been so helpful to me, I want to do all I can. Funny how the family thing works sometimes. You just want to move to Antarctica and deal with penguins! I know whoever coined the phrase "pain in the neck" knew what he was talking about. Mine has no curve to it, sorta like a candy apple. I use a biofreeze spray and gel packs. My doctor also gave me Lidocaine ointment. Works sometimes. Cold seems to work for me. I've actually stuck snow on my neck too. No shortage of that in Alaska!

    Soft hugs,

    Stacey
  14. ... Thank you so much for your support, caring and prayers... And for the chuckle! Yes, sometimes Antarctica doesn't sound so bad ;) And I'm so glad I've been helpful to you, if even a little... Helps me not feel so useless...

    I know you've had to deal with quite a lot yourself, so I know you understand... Thank you too for the suggestions for my neck pain... If the ice packs aren't enough, I'll have to give the bio freeze spray a try. How long does the effect of the bio freeze last? At least the pain does seem to be improving a little...

    Hope you are doing better these days, Stacey... Let me know how things are going... God bless you!

    Blessings and Gentle Hugs,
    Shel
  15. ... It's so ironic that you said "sounds like you're a wonderful mom" because lately I've felt that this DD has caused me to fail as a mom. All the things I WANT to be doing with and for my kids, but can't... And the anxiety that this DD has created in my two youngest is just unacceptable to me... And makes me feel like a dog...

    I do try to put on a brave front whenever possible, but from time to time, the frustration of this disease and all the limitations that come with it (along with how bad it can make me feel physically) can bring me to tears... So unfortunately, my kids have heard me crying in my room occasionally. Thankfully, it doesn't happen often, but I wish that we're never the case.

    I'm sure the fact that I have chiari malformation (herniated brain stem that causes crowding of all the nerves going from our brain to our spinal cord... It can also cause permanent nerve damage, paralysis, and hindered flow of brain and spinal fluid)... I'm sure this impacts my condition and emotions, since I've learned that the brain stem controls emotions, among other things, as well as balance and the autonomic nervous system.

    I'm not actually completely bedridden... Although there are times when I am... Thankfully, I still am able to walk around my house some. And while I am mostly home bound, I do get to occasionally get out of the house, which is always a treat... But like you, I pay a terrible price afterwards... It always causes days, some times longer, of exasperated symptoms, and usually causes me to be bed bound for a while. SO FRUSTRATING!

    And if I've really gone beyond my limits, I can wake up the next day unable to move a muscle and unable to utter a word... Those are the scariest times for me... But thankfully, those times are infrequent...

    Andrea, I'm so glad you're back on this board and are able to share what you're dealing with... Such a blessing! And I'm also glad that you have a strong faith to help you through all the struggles and challenges that come along with this DD. I know I wouldn't make it through this condition without the Lord's help, love and strength.

    I will be praying for you and that your blood work gets to Phoenix in time so you don't have to repeat the blood work a third time. Let me know how it goes.

    I hope you have a very blessed Easter as well! I don't get to go to church anymore because of this DD and I miss it terribly... But I will be rejoicing tomorrow just the same! God bless you!

    Blessings and Gentle Hugs,
    Shel
    [This Message was Edited on 03/30/2013]
  16. Just wanted to thank those of you who prayed for me... As of yesterday, things have definitely improved... And I can't thank all of you enough for caring... Would love to give each of you a BIG hug!

    This DD is hard enough to deal with, but the isolation and lack of support makes it so much worse. So thank you, Sunflowergirl, Andrea, and Stacey for " standing in the gap" for me and for your encouragement. It means more than you know...

    Not sure where the rest of my friends on this board have gone, but hope they are doing ok and will come back :(

    Blessings,
    Shel
  17. tjblueeyes

    tjblueeyes New Member

    I will definitely pray for you. I'm assuming you're a Christian and if so I will pray for the Holy Spirit to heal you. Remember, he that is within us is greater than he that is in the world. Forgive me if I made a wrong assumption. No matter, I will pray for you none the less. God bless you.
  18. ... for your prayers! I appreciate it more than you know...

    Yes, I am Christian, so no apology necessary :)

    And thank you for the reminder that "greater is He that is within me, than he that is in the world." Such a powerful verse... I DO need to remember that... Thank you tjblueeyes!

    Are you new to the board? And do you have FM and/or CFS/ME... Or something else? I would like to support and pray for you as well :)

    God bless you... Thank you for your response and prayers, tj!

    Blessings,
    Shel
    [This Message was Edited on 04/05/2013]