... try to help her but don't know how. I suggest support groups, etc but she refuses. I kind of know what she's going thru. I have had epilepsy for 40+ yrs with no success w/control. My sister was a nurse for over 20 yrs and now she is on disability (like me). Please help me to help her
You are the best person to help her ... first of all she needs to want to accept that help and seek help herself. A support group would be great. If she doesn't want to go out, and has internet access then she could perhaps join the forum https://www.drugs.com/forum/
I'm sure she'll find lots of people there who will be able to offer online support.
She needs to find a good endocrinologist and run some growth hormone stimulation tests. I had four of them. First there is the L-dopa stim, the glucagon stim test and the insulin tolerance stim test. There is one with arginine that gives a false positive result. When I started on growth hormone (Norditropin) I felt much better. My thyroid meds had to be increased also.
I am also on Cymbalta and tramadol which both greatly reduce the pain. Hope this info helps your sister! I also had to retire because they would not let me try part time so I am filing for workman's comp.
The fatigue never goes away except when I take some kind of stimulant like ginseng or green tea which is not good to do all the time, but helps if you have something to do like cleaning house or going out with your friends or family.
Unfortunately you can't make her accept it. Being a nurse unfortunately doesn't help out much because people who know alot about the medical field are some of the worse patients. I used to work in a hospital and two of the worse patients were doctors and nurses. She was a nurse for 20 years so I am sure this must be extra hard on her, she probably doesn't want to sit still and now she has too. I was active alot in my life and now I am pretty much, permantely side-lined and I don't like it either. You are doing the best you can do by suggesting support groups and trying to be there for her. She is probably going to need a pain specialist and a counselor to get through this is she will do it. I hope she accepts some help soon so she don't end up severely depressed or possibly having suicidal thoughts. Not trying to scare you just trying to help you understand how much of a touchy situation this could be.
You may want to try and see if you can get her to come on this site, it may help her realize she is not alone if she doesn't want to join us yet maybe she can read some of the posts on here and see if that may encourage her as well. Keep on encouraging her as much as she will allow you to you are doing the right thing by just being there for her, just be careful not to push to hard just keep up with the gentle encouragement you doing fine, I wish I had my family to encourage me instead of putting me down. I am sorry about the seizures not being under control. Have they figured out exactly why you have them? Why haven't they been able to control them--not the right meds or something? I hope you are seeing a Neurologist, you may even have to see a Neuro-surgeon. Sometimes a Neuro-surgeon knows more but I can't guarantee that though. I will definately be praying for some control over those seizures, that must be scarry for you. Keep up the good fight you two will make it. Good luck with much love and respect, marjorie zych
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