New to the board, living with FM/CFS (trying to live)

Discussion in 'Fibromyalgia Main Forum' started by nitengal42in, Aug 8, 2003.

  1. nitengal42in

    nitengal42in New Member

    Hi everyone.

    I have been a lurker for a few days and have to say that I have found most on here to wonderful. It is awesome to finally find people who understand what I go through on a daily basis.

    A little about me. I am a 32 year old mother of one beautiful little 9 year old girl. I am married to the most amazing man ever. He has stuck by me through everything and has just been wonderful.

    I was diagnosed with FM/CFS in 2000. I have been fighting SS for disability and have recently hired an attorney. My next step is to go before an ALJ. We will just have to wait and see how it goes.

    Not only do I have FM/CFS, but I also have a pacemaker that was put in in 1999, PCOS, and out of control hypoglycemia (which I understand is a part of the FM). There are so many other things but I dont want to bore you, lol. Basically, I am a walking disaster!

    I am a lucky one though. I do have a wonderful Rheumy. She not only understands me but also suffers from the same thing. She treats me aggresively and I am so appreciative of that. If I tell her a med is not working, she is not afraid to try something else. I am on a Duragesic patch, 50mcg, which does help some, but I think I am going to have to have it increased again soon. It has been the only thing that has worked well for me. Yes I still hurt daily, but I can function a bit more than I used to. I dont find that it impairs my ability to think much, but yes, it does prevent me from driving very far. I get so groggy. I am so happy to have my hubby here to help me. I also take Vicodin 7.5 every 4-6 hrs as needed, Bextra, Elavil, Zoloft, Xanax, and a ton of natural supplements.

    I also have a great PCP. You see, I have been morbidly obese for the majority of my life. After my diagnosis of FM/CFS, I gained even more. Depression kicked in, not to mention the excrutiating daily pain. I made a huge decision 11 months ago to have weight loss surgery. I have to tell you, I am thrilled with the results. I was 310 pounds preop and now weigh 189..and I am still losing. No my FM/CFS did not improve, but my mobility has. I know this was a radical decision, but it was not made lightly. I am a nurse by trade so I knew all the risks. I made an educated decision. It was my last hope to ever live somewhat of a normal life. (Nurse by trade but have not been working for over 2 years due to FM/CFS).

    I just wanted to say hello to everyone and I hope that I can become an active member of the board. Like I said, it is so nice to meet people who know what its like to live in my shoes. I read your posts last night and my husband asked me what was wrong because as I was reading, I was crying. It was the first time I had seen so many others who REALLY understood me.

    Lots of love and gentle hugs
    (not too tight, it hurts)
  2. wle

    wle New Member

    I am new myself, been here fro the last couple weeks - since my Dr. decided to treat for FM. She/he (there are two in the practice and I can see either)really listens to me and doesn't mind when I come in with a hand full pf printouts from the computer. Doc says he doesn't know how I am feeling unless I tell him. So unlike my last Doc who tried to tell me how I felt! COngratulations on your weight loss. I too am overweight - need to lose about 150 lbs. Know that I would feel better if I did. Have lost some since we put in a pool this summer and I have been doing exercises in the pool. Well, I am off work in 3 min. so am going to sign off this computer and go home.
  3. Shirl

    Shirl New Member

    Hi Stacey, welcome to our world. Glad to have you join us.

    It is hard to find people who do not suffer from these two illnesses to understand how you feel. They truly don't understand.

    Congrat's on the weight lost, that was a brave step to take.

    Again, welcome to the board, and am looking forward to knowing you better.

    Shalom, Shirl
  4. DeMcKen

    DeMcKen New Member

    Just wanted to say a quick "Welcome". Feeling ow-y from sitting so I have to get off the computer but looking forward to getting to know you. I'm about your age witn a 12 year old daughter so we have a lot in common! (Without the great husband tho, does yours have a brother?) :)

  5. Iggy_RN

    Iggy_RN New Member

    I am a nurse in training, if you have any sound advice for a rookie like me, let me know! It sounds like you have a rheummy that is one in a million. My rheummy referred me to a pain clinic cause he will not treat pain, but needless to say, I am finally getting relief... I am 38 and a mother of a 7 yr. old girl, she is my life, and have a compassionate husband as well, we have alot in common. I fought w/this illness for so long probably on and off for 10 years, but was finally dx'd about 4 months ago. It was a relief, but now the work is kicking in, we have to really watch everything as far as diet, supplements, stress, health in general, this DD has so many facets, its overwhelming. Again welcome and God Bless, IGGY
  6. nitengal42in

    nitengal42in New Member

    Thank you so much for the warm welcome. I can see I am going to like it here.