Thursday, September 23, 2010 Gabi asks

Q: I have MS and am mostly in bed or wheelchair. I am suffering from pressure sores.

The problem is I have a bad back and arthritis in my hips and pelvis which leaves me few choices for sleeping positions. I also have limited range of sitting due to where the ulcers are located. I am going to be seeing a new MS specialist soon and my primary can't get me in till next week. In the meantime Im suffering with pain and burning and itching. I can't "get" to them to clean them properly and have no one to help me do so, and I suffer from bowel and bladder incontinence, so I have to wear protective undergarments and use padding on my bedding which doesn't help with the sweating and the overheating problems. So Im wondering is anyone out there been in the same boat I am and if so what did you do to get some relief? I can't stand but maybe a couple minutes and then my "good leg" begins to weaken on me and I have to sit, sitting it very painful and quite irritating because of the undergarments and my clothing, lying in bed isn't to bad but because of the incontinence I still have to "wrap up like a mummy" although the way my bed adjusts(not a hospital bed but just an adjustable frame on a temperpedidic mattress) I can take some of the pressure of my tailbone and buttucks but staying like that all night as I said is not possible so I toss and turn and I know thats not good. Im not sleeping right so I am exausted all the time, Im not eating right because of the bowel troubles and that isn't good for my MS or the ulcers to heal. I have also recently contracted sinusitis and bronchial pnemonia so that just adds more fun into the mix because I can't lay flat and 30 degree rise just isn't enough to keep me from crouping my head off all night. So I am asking PLEASE if someone could make some suggestions for me to help until I can get into see my doctor I would most graciously appreciate it.

Thank you!

Gabi

Yes I have MS...Want more information?

Please visit http://www.nationalmssociety.org/

- A
- A
- A

Answers (2)

MWMS

9/30/10 11:28pm

Gabi, my heart weeps for you. At the same time there is apprehension that there is a possibility that I too might become like you. It is not fair to heap so much suffering on one soul. I pray that you will recover at least partly.

Gabi

10/ 5/10 1:40am

Thank you both for replying, sorry bout the single post but it's much easier to address both of you once instead of each of you twice. I went to see my primary she got me a script for medrol but I couldn't afford to get it then and hubby forgot to stop today. As for the blistering, she took cultures She said they look like some form of ulcerations but was unclear as to what it was specificily so she gave me a refferal to a dermatologist who again isn't in his office but 3 days a week and I couldn't make an appointment the last 2 times I called cuz I got the answering service :( Meanwhile Im itching and burning and have these icky spots on my back and tushy and she couldn't even reccomend treatment for them. she said Not to cover them not to use soap and water on them (good thing as water hurts!) I asked her about the antibiotic like neosporin or something and she said "she" wouldn't do "anything" with them until she saw the derm just to be sure the wrong thing isn't done.

So I have to be VERY careful and watchful as the bowel incontinence could erupt at anytime and THAT I don't need.

Soon I will see the Derm and (hopefully) soon the new MS doc as well, seems I call at the wrong times and can't get the appointments desk. I will tomorrow though because on top of the me junk and the infections and the recent falls. I NEED to get in and see what's going on.

Will keep you all posted and than you for the thoughts and prayers.

Gabi

Yes, I have MS, want more information?

Please visit:

http://www.nationalmssociety.org/

Thank you!

thelambsink

9/24/10 2:51pm

hey gabi this is daniel this is the worst story I have heard. as far as the soars get some triple anti-biotic ointment and cortasone for the itching. as far as the arthitis put warm heat on painful areas ONLY. as far as sweating this may be due to pneumonia go to the emergency room. they have wheelchair vehicals REQUEST IT WHEN YOU CALL 911. I wear undergarments and the tighter I get them the more snug they feel. as far as your clothes wear loss fitting or just a bath robe. This will make you move freeer and wrap around your body tightly too! as far as sleeping try low volumn relaxation tapes and hang in there till you see your neuro. I'll pray for you and GOD BLESS YOU LOTS. bye for now!!!!

Gabi

10/ 5/10 2:45am

Hello Daniel,

I re read your post, and even though I said I was only going to post once I thought I should respond seperately to yours. Although I didn't go into complete detail on the post, heck it was long enough as it was. I notice you said it was the worst story you had ever heard. That intrigued me because there are many out there with much worse situations than mine (I keep telling myself that when I hurt or itch or can't move my leg or stand by myself for more than 2 or 3 minutes because my "good leg" is getting weaker) when I make a midnight mess while sleeping and it wakes me and I am soooo tired and hurt so bad, but I NEED to clean up myself and my bedding, as best I can cuz the washer is downstairs and I can't do steps. Then I have to remake my bed...and I think GOD how am I to keep going? I tell myself, because you HAVE to, because there are people out there worse than you, but in the back of my mind I think yeah but they have aids, they have supportive husbands and elder children they can count on...at 1, 2, 3, 4 in the morning, I have me! From 6:30 am till 3:30 pm I have ME! and most times even during those hours he is home, I still have to depend on myself for 99% of the things that need to be tended to for myself, sure he takes care of the house as best he can(no where near where I used to, but hey we all make concessions and I can't complain because he IS doing something.)

The "story gets worse, thats just the surface in a nutshell I guess, it's why I am HOPING the new neuro will reccomend phys/occ therapy, home visits, and the derm will reccomend a nurse come out daily to help with the sores, 2 x a day would be nice but I would settle for one time. thats why I am hoping the new neuro will see the pain I am in, consider the osteo in my hips and such and perscribe a new bed or at least a better mattress or a cover or something to help take the pressure off. thats why I am hoping the 3 docs (primary neuro and derm) all collaberate and get me the best care I can get, thats why I am hoping I can find a pshy or a therapist for the emotional things I am going through and help me with that w/o costing too much...so many hopes I know, and there are so many with just 1 hope...to get well again. For me that hope is way past(or way too far in the future to have) I can get better, I can hope that I can do that much, but I will NEVER be WELL!

Thats why I know my hopes and prayers are stuck near the bottom of the pile somewhere, my life has been filled with pain and other things both emothionally as well as physically and I guess I just have too many hopes and prayers to be heard when there are so many with such fewer more realisticly possible hopes that are getting answered first...thats ok, I will wait my turn no matter how long that wait may be, I will wait and I will endure what I must until then.

Gabi

Yes, I have MS, want more information?

Please visit:

http://www.nationalmssociety.org/

Thank you!