out of my mind with this whole excruciating new life

[jacqie59]

hello to all. Hoping that we can have a better day.  I am in the middle of being diag. with ms and fibro. I have symptoms for both. Th e meds that I am on have to be child  dosees. because I am sensitive to  many. I am asking for help . I am in pain,can't sit,lay it hurts so much. I am 49 have a profile on ms site and I have received no responces. How do you all get through your days. What meds have you tried that works? How do you stop the over whelming fears,pain,mental,anger,confusion for all that happens to your bodies. I  am new to this forum stuff, never chatted on line before, need some friends as my older children keep saying they have their own lives. I have said don't wait for me to get old to help me. I need you now, I am that 80 year old now. Out of 5, I have 2 that will run a errand . the other that I talk to makes me feel, that my living well constantly crying,or complaining or asking her to help me in any way is such an inconvience to her life. This makes me insane. We were best friends now she insults me. So as I look  at my future it is dark. I have to wait untill april 30, to see a nuroligist with my insurance. My husband lost his job,we lost our vehicle,,so we are in tight quarters, I am so stressed,in pain 24/7 he does not talk very much,and just responds I don't know what else to say or do. This makes me mad. We just had a fight,about th noise from the tv  I need to be in quiet some time during the day, He thinks 17 hours of tv is ok. He helps me  aroud the house and cooks, but that is it, I am on my own. I cry and cry the tears are nuts,this whole thing is frustrating. Please help me with what ever you can from pain to mental,to comfort to sleeping on a body that I have no comfortable position to sleep in. Th e hip pains,walking up the stairs to use the bathroom,     It seems that I can not get this info into my doctors head, I need the new meds now.  It seems you people now more than a doctor,and I also see that your doc's are not that into you also, thank you.

[deedee332]

I am so sorry that you are having such a hard time.  I have been diagnosed with FM/CFS and only God knows what else is going on.  I feel your pain and frustration.  This really is the best place to be as I had a very hard time in the beginning as well.  Everyone on this site is very helpful and supportive.  We all need the support, have to talk to someone.  I cry from time to time when my pain is really bad but I have to say that I have come a long way.  I try to just sit in silence when it's bad.  Take warm bubble baths, Meditate, I can't really do because my brain wanders too much.  You definitely have to think happy thoughts if possible.  Try to occupy yourself with an activity.  I have a supportive husband to a certain degree.  He seems as if he has a menstrual cycle once a month.  I just leave him alone.  Money is tight because there is only one income but I have faith that God has a plan and that today's Grace is Sufficient.  Prayer and reading the bible is what has gotten me to where I am today.  Yes, I still get stressed out over every little thing but once I pick up my bible all that fade away.  Noise and lights bother me and I know that my hubby gets a little frustrated when I complain but what can you do.  I am forever telling him to turn the tv down because it is too loud.  It's irritating to the point where I just want to break away from it all.  It was just on Sunday when I felt that if I just didn't wake up that would be fine.  I called my psychologist whom I haven't seen in about 3 months to schedule an appointment.  I will see him on Friday.  I have a couple of case managers through my health insurance who contact me via telephone to check on me.  I just spoke to the Mental Health person yesterday and she felt that I have good support systems in place.  I told her about this website and the pain trackers and 2 other websites that I go on.  It helps that for sure.  We need all the support that we can get.  God Bless You and feel free to contact me via email anytime.  Take Care
Delores

[kiddthekatt]

  I've gone back over this post several times and I've caught myself crying each time.
jacqie59, I am so sorry that you have so many stresses on you at this time.  I know from experience how difficult it is to function with help from my family, I don't knowwhat I would do if I had no one.  I pray that you find relief and that you find some way to get the pain under control. You found the best place you could have found here at MH. I feel very fortunate that I have so many cyber friends who do care. Please let us know how you are doing.

gentle hugs
Angel

[tiredofbnsick]

I just wanted to lend an ear because I know how difficult it is to live without support in uncontrolable pain. Although it is extremely hard the only way to not fall into a deep depression is to try to think in a positive way as hard as that sounds. Meditation, positive thinking, slow progress and an aggressive approach when talking to doctors. I keep a diary of my daily condition. It really helps when I am having a very bad day and in a lot of pain. Many times I wonder if the diagnosis is accurate because I can't remember that I was in such pain ever before. However if I look back in my log I can see that not only was I in a lot of pain but I described it worse than I might be feeling at the time. It reminds me that it will pass and I will feel better if I give it enough time. My pain comes on very slowly and then stays with me for weeks or months and then very slowly it goes into a remission of sort. It never goes away but it does plateau with a combination of meditation, light exersize, medication, chiropractic care, massages (if able) & a reduction of whatever might be very stressful at the time. I HATE this condition but I can't stay angry all the time because when I do it comes back bigger and harder every time.

Two weeks ago I thought I would never get over the most excrutiating pain I have ever felt in my life. It scared me. It lasted over a month and I thought I just might not make it one more day. The happy news is today my pain level went from a 10 out of 10 to a 3 out of 10. I can function again. I know it isn't forever but I also appreciate things so much more when I come out of a very bad flare up.

This is a great forum for support. I am new to this site but I have found a lot of people who are in the same boat as I am and it feels good just to be able to know that other people understand.

Keep searching for relief. It is out there. You deserve it. Don't stop trying. I am always thankful for the better days even if they are probably considered the worse day for a "normal" person.

[VaBreeze]

Having a chronic illness of any type causes isolation.  Friends, family, spouses...they have a difficult time dealing with it.  Since we can't do the things we use to do, others stop asking.  It happens and it's unfortunate because we do need others who care, even if they don't understand our pain.

tia made a good point about meditation.  Yes, we suffer, but the more we tend to focus on our pain the worse it gets.  Emotions play a huge part in how we feel, mentally and physically.  If you aren't able to get to a counselor, you can call a crisis hotline and just talk or stay in touch through forums like this with others who can relate.  It is important to keep a positive outlook...although that is one of the hardest things to do when in pain.

Everyone here suffers and we can all relate and understand what you are going through.  We know it isn't easy; we know that it changes lives; we understand the fear, loneliness, frustration and anger with having one of these illnesses.  Until a cure or better treatment is found we must take our own paths to healing the best way we can.  If we don't uplift our minds we will end up in horrible depression, which makes it hurt worse.  We do understand and are so sorry that you are suffering as you are.  

Main points with FMS -

Get good sleep.
Pace yourself...don't overdo things.
Find something you enjoy that you are able to do (ie. games, writing, scrapbooking, photos...etc.)  Something to take your mind off the pain.
Meditate or take a warm soothing bath.
Don't be afraid to ask for help...from your children, husband, others.

One thing you do need to think about is your high cholestrol.  You need to get it under control...if not with medication, through diet.  This, left untreated, can cause some serious problems down the road.

I hope you find something in our Health Pages that will assist you and that you feel better soon.  Take care.

[PlateletGal]

I know I've lost "friends" after my CFS diagnosis, but I thank God for those friends and especially my best friend who is very supportive. My husband is also very supportive and I thank God for him.

What helps me with my worst symptoms (exhaustion, weakness, cognitive problems) is remembering things I did when I was healthy and thinking of fun times I've had even after my CFS diagnosis. I also focus on the latest research and am on a treatment that has been slowly restoring my health.

[tia77]

I am also new to this all and just was diagnosed about 2 or 3 weeks ago.  I am sorry you are going through this.  I also feel alone.  I do have one good girlfriend but how much can you complain before they turn the other way.  I have made an appointment with a new doctor the will work with me.  My first said there wasn't much that could be done.  If you read what everyone else say's here there are things that can help with the pain.  I think the mental part of it is the worst.  You have to kind of play a game in your head.  I have been trying to meditate.  Go into the bathroom if you have to.  I know how it is if you live in a small home.  I try and picture myself on the beach with my kids.  Everytime my mind slips or I just start thinking about the pain i tap my fingers and think of "my happy place".  Think of the best time of your life.  I know it is hard but this has helped me.  I also try and distract myself as much as possible.  The more I can keep my mind off of the pain the better.  Good luck and keep on going to doctors untill you find one that will work with you. That is my plan until I see my new doctor.  If I don't like her I will move on to the next.  Good luck

[PlateletGal]

Hi jacqie59,

Since I don't have fibromyalgia (I have CFS), I can't really relate. I do often have severe migraines though and they are very difficult to deal with and I wouldn't wish that pain on anyone.

I'm sure some of our fibro MedHelp members will respond to your post. In the meantime, I thought I would share this link with you. It is a link to our Health Pages and we have info on "pain relief" strategies and members' testimonials. I hope that this will be of some help to you and hope that you will stick around.... these illnesses can be awful, but there is hope and physicians who are out there fighting for us and coming up with possible answers and new treatments.


http://www.medhelp.org/health_pages/list?cid=39

Hugs,

~PlateletGal