Not the best tonight,not the best latley

Discussion in 'Fibromyalgia Main Forum' started by Sheila1366, Jul 28, 2006.

  1. Sheila1366

    Sheila1366 New Member

    I have had fm for a few years now but officially dx. July of last year.

    I am under a tremendous amount of stress.My daughter has a pituitary tumor caused by cushing's disease.It has been a very very difficult time for her.Cushing's is a very awful disease and very rare in children.My daughter is 15 and cushings is really affecting her due to her age and puberty.

    The tumor has caused a great change in her personality.Severe depression and psychosis.

    About a month and a half ago she has her first ever severe psychotic episode.She became physically violent with me and ran outside to run into the road which lead me to drop us both to the ground.She was not herself at all.It was very scarey for her once she regained her senses.And I was in shock.My daughter is a very strong girl and she really beat me over really hard.

    Every since then my fm has been in high gear.I was taking lyrica,almost to the max dose and was still in pain and having a terrible time with my raynauds.

    I haven't posted on the board in awhile cause I have been very busy researching cushings disease and getting help for my daughter.I am so very tired and I am at the point that when I get up out of a chair or out of bed I have the hardest time standing straight.

    I hurt everywhere.My wrists hurt so very bad at night I will have the hardest time trying to find a comfortable position to sleep where my wrists won't hurt worse.

    I even took one of my husbands hydrocodine.Half of a 725 mg.hydrocodine.No help.

    My ribs have been killing me.Even went to the gastro. dr. to have stomach checked.It is fine.

    What new meds. if any are out there to help with this pain.I see rehuemy. next month for check up.What can she do to help me?

    Sorry for the long post been awhile since I have talked about this on the board or with anyone.Been very focused on my daughter.

    Thanks for reading my post.
  2. mrpain

    mrpain New Member

    I am so sorry to hear what you have been going through. If I had some words of wisdom I would definitely share them with you. My daughter has OCD & Touretts but that's nothing compared. I also suffer with pain when I lay down to try to sleep. My shoulders, neck & back are my main problems at night.

    Have you tried taking a larger dose of hydrocodone for pain? Although for me, that wouldn't help me at night because I actually get energy from that med...Everyone is different though..

    Hopefully your doc will help you in that area and at least make it a little more tolerable...Take care and let us know how things are going..Wish I could be more helpful!
  3. hugs4evry1

    hugs4evry1 New Member

    I'm sorry you're going through so much right now, I do understand how most of it feels.

    I don't mean to sound simplistic, but much of my pain was eased with a good balanced mag/cal/zinc supplement last year. I've made lots of changes over the last half of this year too that have me feeling better.

    Another one is the Fibro Complete Multi w/Malic Acid that they sell here and some other supplements and herbs.

    These changes have made a huge difference in how I'm feeling and it allows me to deal with everything that's going on in my house.

    I used to take a store brand multi vitamin as most people do, but I think our bodies are starving for nutrition and these good power vitamins are just what our bodies need. (More than "normal" people do)

    I'm hangin by my fingernails trying to come out of this 2 year flare, my husband is sick now too and my daughter with psychiatric problems moved back home in March and it continues to be a very difficult situation. I wouldn't be able to do what I'm doing now without these new supps, I know that.

    Do the docs plan to do anything about your daughter's tumor?

    Are they treating her for it? Will the psychiatric problems reverse when the tumor situation is seen to?

    I've been spending hours online recently searching for information on psychiatric service dogs. Read about them in a recent People magazine and I know it would help my daughter too.

    Unfortunately, we had an appt to go see a litter of Goldens this morning but I couldnt' make it. I know you have a lot going on right now, but would something like this help you?

    Hang in there and let us know if there's anything we can do to help.


    Nancy B.
  4. TAM

    TAM New Member

    Hi Sheila,

    My heart goes out to you, i can imagine that all the extra worry and stress your having dealing with your daughters cushing disease has led you into greater pain, you poor thing. I really wish there was something i could do to help you and your daughter. Your daughter is so very blessed to have a mother like you, your in great pain yourself but like a good mother you put your daughters health and well being first, i would do the same for my son of coarse. Your daughter will be fine shes in wonderful hands with a mom like you.

    But you need someone to help take care of you sweetie and your bad health. Do you think maybe your husband could care for your daughter one day so you could get some well needed sleep or just be able to relax and have a do nothing day except what you want to do.

    I really hope that your rheumatologist can give you something to help your pain when you see her next month. Jeez i wish you could get in sooner to see the doctor.
    I can't offer any info about what meds are out there to help you with your pain because i'm in the same boat no meds have ever been able to even touch or help my pain even a little.

    I wish you the best and lots of happiness. I hope your able to find something to help your daughter and i hope you find something to help with your pain. I wish had some info that would help you with cushing disease but i have never heard of that. I can only imagine how difficult it has to be for you and your daughter. My thoughts are with you and your daughter i hope everything works out for both of you because i do care about you both and hate to hear that your both feeling badly. Take care, and let us know how your appiontment goes next month and keep us updating on your daughter hopefully you can report good news. Tammy.
  5. Lolalee

    Lolalee New Member

    Sheila, I am so sorry for what you and your daughter are going through. It must be so difficult for both of you. I know the stress must be affecting you in a really bad way. Are you taking anything for anxiety? I find that if I can't relax because of the pain, Xanax helps me a lot. Of course, if you and your doctor do decide that you should take Xanax, you should be very careful at home and not let your daughter have access to it.


  6. Sheila1366

    Sheila1366 New Member

    My daughter will get better once the tumor is removed.Recovery is hard due to the sudden drop in her cortisol level.The tumor is overproducing cortisol.That causes many problems physically and mentally.She has not been herself emotionally for a long time.

    I wish my dr. would give me hydrocodine but she keeps pushing this ultram.Even when I was needing to push my daugfhter in a wheelchair which also meant getting the chair out of the van and setting it up.

    I was in so much pain and told my reheumy's nurse but yet the dr. only said to take my ultram with the lyrica.The lyrica was doing nothing so I weaned my self off of it slowly.

    Now no pain meds. at all.I may take one of my husband hydrocodines tom. morning so it won't keep it won't keep mke up.

    We go Duke hospital in Durham,NC to have another MRI for Carrie.Surgery will be the next week.I do have respite coming in to help me twice a day.But they are here for Carrie not me.I have to stay on top of things so I can show them how to help me.

    I am gonna sign off,write in diary and put on some sleepy time music.

    Thanks for he support,
  7. Cromwell

    Cromwell New Member

    I am really sorry you are going through this. I recall you have been off the boards now.

    Is there nothing they can do for your daughter? It must be terribly hard opn you all.

    Have you got her registered DD so you can get respite care. SPOA is part of mental health and you can sign up and have rspite and help via them. Plus DD used to give us respite workers who would come to the house when Danny's autism was worse.

    I would think it is essential for you both that she gets respite, give you some time off, even for a few hours a day.

    Didn't JFK have Cushings?

    Love Anne Cromwell

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