Discussion in 'Fibromyalgia Main Forum' started by tlayne, Apr 29, 2006.

  1. tlayne

    tlayne Member

    I haven't seen you here lately. How are you doing? I have been sleeping A LOT. My Dr. prescribed LDN for me! I am kinda hopeful....I do not want to get my hopes up to much d/t a big let down. I haven't started it yet. I decided to get it filled in New York because I do not want to take a chance on it not being compounded right. Let me know how you are, I have been thinking about you. Tam
  2. tlayne

    tlayne Member

  3. ritatheresa

    ritatheresa New Member

    I haven't been posting because I've been pretty much down in the dumps. Wow, it made me feel so nice to see my name, I'm touched you've been thinking about me.

    I do hope the LDN helps, it does show alot of promise. Please keep me updated. I haven't even discussed it with my doc yet, so much going on!!! How many mg?

    The fatigue and pain are pretty much the same. Right now I'm waiting on my LTD disability decision, which I'm almost sure with be denied. To say I'm panic stricken is an understatement. My family basically told me they can't help me and if I'm denied I've got to work, which I truly in my heart know I can not do.

    I just wanted to write you back, I'll definately keep you updated. Thanks again for thinking of me, it means so much, God bless, Ritatheresa
  4. tlayne

    tlayne Member

    I am so sorry that you are having such a hard time. It must be in the air, it seems like everyone has had flares. But I am MUCH relieved that you touched base with me. I was worrying about you for some reason. I will pray for you.

    I really did not want to make a big deal about starting LDN, but to tell the truth I am so....hopeing. If it works the first thing I will do is tell all of my new friends here. I had to share this with you tho. I am still looking for that miracle that will give us our lives back. I keep telling myself that I only need the faith of a mustard seed!!!!

    Hang in there rita, I am thinking about you & God loves you! Love & prayers Tam
  5. tlayne

    tlayne Member

  6. ritatheresa

    ritatheresa New Member

    Hi Tlayne, I wanted to let you know I am feeling better today. The stress from what is going on has really been getting to me.

    I've been through so much adversity and somehow, someway have made it through, (God's grace)

    If nothing else I'm sure of that. Good luck, I'll talk to you soon, Thanks again, Ritatheresa
  7. tlayne

    tlayne Member

    I hope you are doing good! I have been doing the same...seen better days. I started LDN Friday night. I was really hoping for a BIG improvement, but that hasn't happened so far. I am still tired, but I haven't been sleeping all day & all night too. So I guess it is fair to say that I have some increase in energy. It is really too soon tho.

    I hope you are still doing good! Hugs, Tam
  8. tlayne

    tlayne Member

  9. ritatheresa

    ritatheresa New Member

    I wish I could say I'm doing well, I just hate being tired all the time. My energy level is really bad. It's become so hard to function and take care of my daughter, the dogs and the house.

    I'm just very overwhelmed and I feel like I'm being buried.

    I'm keeping my fingers crossed for you, I hope it helps, I'll check in soon, Ritatheresa
  10. tlayne

    tlayne Member

    I have been looking for you. I hope you are feeling better. I am having a pretty tuff time of it also. I was so hoping the LDN was going to be the miracle drug for this dd, but I am not so sure as of now. I am determined to stay on it for a few months to give it a fair shot tho.

    I am worried about you. Did you see my post titled: To all my friends who are just looking? I was having a really good day that day!!

    Please let me know how you are doing. I am thinking about you and remembering you in my prayers. Hugs, Tam
  11. tlayne

    tlayne Member

  12. ritatheresa

    ritatheresa New Member

    I did see the post and I started to respond but I wound up deleting it because I didn't have the energy to finish. I know, I'm silly!!

    You are so kind, I thank you.

    I've been having really bad anxiety and have been pretty much bedbound for the last couple of weeks. I just want to hide under the blankets. Very overwhelmed.

    This is unbelievable. This experience has been an eye opener to say the least.

    I'm going to try and go back to work part-time because the financial fear is really crippling me. I'm nervous but I can't live like this anymore, the insurance company is playing games and I just can't do it. (Which is exactly what they want).

    Physically, my pain isn't so bad, it's always been the fatigue. I know in my heart they'll figure this out one day.

    So please, keep me in your prayers, I so appreciate it. I will do the same for you.

    How is it going with the LDN? I hope well. I'll check in soon. God Bless, Ritatheresa
  13. tlayne

    tlayne Member

    ...now that you checked in! God must have placed you in my heart because I sure have been thinking about you. Remember that he never gives us more than we can handle. I know, I have to remind myself of that too! I will pray that God will give you peace, strength, & energy. I will ask him to hold you in his arms. We have to have HOPE!

    About the LDN. I think I got discouraged because it hasn't been an overnight miracle. But honestly, I am feeling some improvement every day. It has been small steps, and sometimes I over do it and go back a few more steps. I am taking LND 4.5 mg (I told you 4mg, but I was wrong), Flexeril, Estradial (hormones), and last night I found an old script for Gabitril & took 1. I will take it again tonight.

    I found a post about Subutex (can't remember who posted it). They said it helped with flares, so I did a search on it and it sounds a lot like LDN. Wouldn't it be just like the Pharm. companies to find that Naltrexone works, so mix it with something else so they can charge a ton of money for it. What an attitude that I have! lol

    I will keep you posted. Please stay in touch, I am worried about you. Sending you prayers & a hug, Tam
  14. ritatheresa

    ritatheresa New Member

    I'm sorry I haven't written sooner, I haven't been on the boards lately.

    How are you? I hope well!!

    Me I'm ok. I'm actually going to be starting work per-diem next week. I'm nervous, but I've got to do something because I'm literally going to go out of my mind. I do home care so I don't administer meds so I'm not worried that I'll make any serious mistakes.

    The anxiety of not having any money coming in has probably been the hardest of this whole process. There's a part of me that's somewhat excited. I love nursing. Most times it's the unknown that totally freaks me out.

    I've actually been looking into a program at Columbia University in Manhattan. It's like a second opinion.
    It's an extensive work up done by neuropsychologists, psychiatrists, neurologists, sleep specialists etc. basically they review your history, work you up and give you recommendations from a fresh perspective.

    It's run by the department of psychiatry, I know there is alot of controversy as to whether this is a physical or phychological disease but I believe for myself it is originating from my sleep. My fatigue has always been the primary symptom. Depression secondary. Pain comes and goes. So that is where I think I can get some help.

    Especially with the neuropsych testing, to actually see what's going on in my brain. I would just love to have some slight relief and just stop taking all these meds.

    Well I guess you can say that was a mouthful, I hope to hear from you soon, take care, Ritatheresa
  15. tlayne

    tlayne Member

    It sounds like you are doing somewhat better! If you are like me the fatigue hits you like a freight train, and the recovering part creeps up so slow that it is hard to acknowledge it. I usually end up doing too much on the days that I am feeling better & then relapse.

    Please remember "baby steps" as you go back to work (I am telling myself this too). I keep thinking that I will be going back to work soon also. Not now, but hopefully it is just right around the corner! I am not going to make any commitments for awhile, so PRN it will be.

    Wow, how interesting it would be to go to Columbia University for a FRESH perspective! Let me know how this goes for you. I am hoping for the best!

    I went to the dr. Monday. I spent all day with my grandson's 1st grade class in a field trip on Friday, and I have been having problems since then. I have edema so bad that it looks like I have gained 10 lbs overnight. My dr. thinks that I have been taking too much Ibuprofen and that it is affecting my kidneys. That is scary! She gave me a script for headaches & after not taking the Ibuprofen the swelling has gone down. I think the headaches are caused from muscle spasms in my upper back & works its way unto my head. She also ran blood tests for Lupus & RA.

    I hope & pray that you are doing better! keep in touch, Tam
  16. tlayne

    tlayne Member

    just checking in. How are you? I hope you are doing better.

    About the LDN... I quit taking it for four days, and I could not believe how much it was helping me. The pain and numbness in my legs, hands, and every body part (pain) came back. I can't really say that it is helping the fatigue tho. This is GOOD NEWS!!!! Now if I could just get over the fatigue.

    Did you start working? If you are, I hope you are able to take it slow. I am thinking of you and hope all is going well. Hugs, Tam