I spend the majority of my time in bed [I](knitting, of course! lol)[/I] and was wondering if there were any others who were in the same type of situation? I barely leave home, since any kind of traveling makes my pain worse and have to have help to do any type of shopping, etc. and have to have my family help most of the time with housework and other daily things.
I have Central Pain Syndrome [I](or is it RSD?.. they can’t decide)[/I], Fibromyalgia and Rheumatoid Arthritis. Being only 44 y/o [I](as of yesterday)[/I], I can say that sometimes I feel I’m the only one in this situation, but I know there must be others.
Pain is just a normal part of my life, no matter the medications I’m on and knitting gets me by and keeps me sane. I am so glad that I found this forum and I hope to become even more involved here as time goes on. Coming here and “visiting” is like a trip out for me and I want to thank you all - even if I don’t reply in a thread, I do read most of them.
I’ve actually had pain issues for over ten years now, so in a way I’m used to pain, it’s the ‘not getting out of the house’ part that I’m not used to, since I was always a very active and involved person. We raised 8 kids [I](hubby had 5, I had 3 when we met)[/I] so you can imagine how busy I was, ha ha. I think feeling “stuck” is the worst part of it, but I do manage to get by on the “one day at a time” method. Of course, over time the pain has gotten worse, but also in that time, I have learned strength in ways I never knew I had.
I keep myself pretty busy, really. Right here within reach is my laptop, tv remote, phone, paper & misc stuff like that and as always, my knitting bag!! :knitting: I used to crochet almost exclusively, but now I love knitting more!
I just love this place, it’s so interesting and I’ve learned so much already. I joined the September Mitten-A-Long and I keep up with what everyone is up to in that KAL and the others that are ongoing. It helps to keep me inspired in my knitting, as well.
Yeah, I’ll be hanging around a lot, ha ha.
Well, I certainly feel for you. I’ve been bedridden for months at a time and I know it is no fun. It may be for a day or two, but after that it can drive you crazy! I have had 5 back surguries and then after a really bad hyterectomy and complications from that, I was in bed for 6 months, BUT the good side was I found out that one of the medications I was taking for it really helped my back. I have taken every and I mean every pain medication known. Now I wear a Fentanyl patch and another med. and I can actually walk and go to work. Sure most days I come home and have to lay down, but it’s better than before.
Have you tried alot of medications? Have you had a second, third or even fouth opinion?
Wow, 5 back surgeries!! :help: That must have been tough. I can’t have any surgeries now other than if it’s a life or death situation, since any surgeries (even dental) that I’ve had in the past few years have made me much worse off. I’m glad to hear that you’ve recovered enough to be able to return to work, that’s great. :happydance: I’ve never had the fentanyl patches, although I go through different regimens of pain meds, changing when one doesn’t work very well anymore, on to one that does and back and forth… :roll: You know how it goes with those kinds of meds, you get tolerant quickly and that’s no fun.
Yeah, I’ve had more “opinions” than I care to remember. Living where I do, it’s quite a drive to go to the specialists, so I’ve limited those visits now that things are like they are (if that makes sense). Kind of like, after so many telling me there’s nothing else they can do for me besides trying to keep me comfortable, there’s not much of a point to pursuing it anymore.
The first year of being in bed was the worst, at least now it’s a little easier to deal with.
My sweet husband of thirty five years has MS and spends a lot of time in bed. He feels exhausted all the time, and if his meds aren’t done just right, he looks like he has Parkinson’s; at 56 he’s losing most of his muscle mass.
I have fibromyalgia and RA, and CPS which they used to call RSD. (I still call it RSD, it’s mine, and I’ll call it what I want! ) Most days I’m up and about, but several days a month I’ll just crash. The house could burn down around my ears and I’d not be able to do anything about it. He takes twenty-two pills a day, and two injections a week, I take eight pills a day, and one shot a week. Good thing we’re both former nurses.
You sound like you have a good attitude about being in the house most of the time, so does my DH. It’s hard for me not to be going out more, but so many people have it so much worse, I won’t complain.
Pain is just a normal part of my life
Why they call them “pain killers” is beyond me. They just take the edge off, not get rid of it. But I am thankful that after a lot of research, I found one that works well enough for me to be able to take care of things around here.
I remember when my mom was on bedrest after back surgery last year. It was friggen awful taking care of that woman because she would not keep her butt in bed. I would spend all day there, helping with what I could, you know laundry cooking taking the dog for a run. She got to spend time with my babies. Then I would go home at 5 or six when my husband was headed home from work. Give her a call to check that she ate dinner and she would say, oh yeah it was great now I think I will go to the store and get dog food. I was like " Are you kidding me, get your broken butt back in bed and I will get the dang dog food." Could not get her to stay in bed for the life of me. Her reasoning was, Im only fourty why should I just lay up in bed all day, its no biggie to run to the store real quick.
I also understand your problem with the doctors, my brother suffers from tremors and the docs told him there was nothing they could do for him until it got so bad he couldn’t zip his pants. And he told the docs word for word, “Everyone looks at me like I am a raving lunatic on crack and you want me to wait till I get my d*** stuck in my pants before you do something about it, go f yourself dude.” mind you he was 15 at the time and he thought they could just give him a pill and it would be all good.
Like I love to say, thats why doctors are just “practicing physicians”
Sorry to hear about your pain but your attitude is great. I have RA but at the moment it is well controlled with medication, so I am lucky.
I have a good friend who is partially disabled due to severe back problems and she has found great comfort in knitting. I try to visit often and take her to buy her yarn and she has become a really good knitter.
Oh how well I know your pain. I have had three back surgeries and believe me it is not fun. It fixed one problem a disc that burst which in turn pinched a nerve. Now that was a pain that I could have rip a face off. Meaning the doctors, they did find the reason and fixed it. Then it started a pain no one could find. So now I take at least 17 pills a day. So most of the time I am in bed. I only get out and about for little things like yarn:roflhard:. My husbands is great taking care of me, and the house when I am laid up with the pain. Even with the meds and the Spinal Cord Stimulator implant the pain is always there. My knitting does keep me sane and coming here helps a lot for me. This group is a great place of the friendliest people I have ever found.
Keep on knitting we are all here to help with anything.
[COLOR=“Red”]Thanks! Well, I do try - although I didn’t always have this attitude and I [I]do[/I] have my days where it drives me crazy. But it’s those times that I really try to find something different to do… a new pattern or something like looking through the posts here to find some inspiration to try something new - and visiting with all you wonderful people![/COLOR]
[COLOR=“Blue”]I’m so sorry you also have the pain issues and your poor hubby - keep hanging in there - you both must be supporting each other, which is awesome! Not everyone that deals with this type of thing can handle it and it can be hard on marriages. Thankfully, my hubby is very caring and concerned and I don’t know what I’d do without him.[/COLOR]
[COLOR=“Teal”]Thanks for the gentle hugs - you know the drill, ha ha! I agree with the “pain killers” - you described it well - they do take the edge off, but they certainly don’t make me comfortable. I am so glad to hear that you are able to do things around the house and in your life. That is so great! I dealt with most household/shopping things for years, but it was surgeries that put me where I am now, they made me worse off after each one and I wish that things were different, but that’s how it is…[/COLOR]
It sounds like you were a [U]huge[/U] help to your mom - awesome! Out of our 8 kids, there are only 2 that live close enough to help and of course they have their own lives, so I try not to bother them unless I have to. It’s hard to have to ask them to go to the store all the time, etc. Thanks for sharing! [/COLOR]
[COLOR=“RoyalBlue”]I’m sorry to hear about your RA, but I’m glad that the meds are controlling it, there has been a lot of breathrough with arthritis recently.
I bet your friend just loves your visits [I](and the yarn!)[/I]. I don’t know anyone that knits around here. The lady that taught me to make socks and mittens moved about 8 years ago, so I’ve been on my own since then.
FO’s - I just posted a picture of some of my September KAL mittens this morning. You can see a picture here. I took more pictures last night and plan on putting them up here on the forum sometime today.[/COLOR]
[COLOR=“SeaGreen”]I know what you mean about “[I]only getting out and about for little things like yarn[/I]” - that had me actually LOL!!! That was so funny!!! :roflhard:
It sounds like your husband is like mine - I guess that makes us lucky, since I know for a fact that a lot of men can’t handle this sort of thing. They had thought of giving me an SCS, but since surgeries make things worse, they don’t want to risk it. Keep your chin up - we’re all in this together, right?[/COLOR]
[SIZE=“3”][COLOR=“DarkRed”][B]Thank you to everyone for your replies [I](and hugs!)[/I] - all of you are awesome!!! :happydance:
I visit here countless times a day and always look forward to it. I also look forward to getting to know everyone and helping when and where I can.
OMG. I woke up this morning feeling “not so well”. Now I am ashamed of myself after reading your posts. God Bless you all. I am so glad you find comfort in knitting. It is a wonderful thing. Welcome and keep posting.
Teri! Can you please write me about the Spinal Cord Stimulator device! I had a trial run with it that did not go well, etc. You are the only person I have come across that has one! I would love to talk to you about it. My son works with neurosurgeons and I might go see another one, but before I try this again I want more information! If you read above you can see what I wrote to Mainelyknitting (wish I knew her first name!).
Me again! Do you have a first name or should I call you Maineley?
You said you have tried alot of different meds, but if you haven’t tried the Fentanyl patch, I would strongly recommend asking your doctor about it. Not everyone can use it. It is a patch that comes in different strengths. It starts at 25 mcg’s and goes on up. I started at 50 then 75 and now I’m at 100. It is strange that I read your post yesterday and that I’m talking to you and the other girls on the thread today. I woke up this morning and my hubby was threatening to take me to the E.R. The pain is just getting worse and I’m wondering if I may have a problem with my hip. The location of the pain has changed and is getting worse. It’s weird, because the sciatica is hurting in different places. This is at a really bad time (is there ever a “good” time :roflhard:), because I just took a different position at work and I’m still in training. I really don’t want to go to the doctor again.
Well, back to the Fentanyl, it really does work (usually!) You put the patch on and then change it every 72 hours.
Thanks for letting me talk about this. I know you understand! I don’t talk to anyone about it unless I absolutely have too, including my husband. I usually try to hide the pain.
Cindy! Don’t feel that way! Everybody had different things in life to deal with. Maybe there is something in your life, now or before, that you had to deal with that wasn’t physically painful, but maybe difficult or painful in a different way!
So, I hope you are feeling better today!