My family doesn't understand my pain

Hi, my family doesn't understand the pain I go thru every day. If I sit still very long I start to fall asleep. They think it's my medications and tell me to get off whatever I'm on. I have autosomal dominant cramping disease,RA, Fibromyalgia, Neuropathy, COPD, Sjorgren's Syndrome, Stiffman's Syndrome,Scolosis and the list goes on. I am on several narcotics as well as meds for my chronic spasms and cramps. I had back surgery July 3rd. It didn't work. Now I am having a fusion March 18th. Because my words are sometimes slurred and I switch subjects too often, I am told to get off my "drugs". That I don't need to be on them. I have no help at home. A lot of times I try to do every thing I can.Then I am in so much pain I can't get it under control. I have been skipping taking my meds as my husband wants me off my meds too. Also, I get no help from him. I do the shopping, pay bills, clean house,pick up my hubs meds and other items he needs as he lays in the bed 24/7. He has neuropathy in his feet and helps as little as he can.Sometimes gets upset if I ask him to help out. I have friends I talk to and thats helps some but my family doesn't understand my hurts from their comments when I am trying to do the best I can. I am talking to my doctor about all my symptoms and meds and what I can get off of to appease my family. I have been told I will be on my maintenance meds forever as their are several diseases I have that have no cures. Thanks for listening. I may not be able to be on here for a little bit as I also have to go to the nursing home to pick up my grandmothers clothes and wash them. Wishing for your prayers. No sympathy allowed.

Welcome to the forum superglue.

I'm glad you came here. I hope you won't change your medications until you talk with your doctor. If he says not to stop any, listen. Maybe he can help you find an agency or something that can help you too. If your husband has to be in bed he might be eligible for an aide or nurse.

Can you get an hour's help with housecleaning? Maybe there's a local lady or even a high school girl or boy you can train. I have a woman and her grandson once a month, all I can afford. I feel like the house is not dragging me down from the bills and making food.

You'll need help after the fusion, so get that set up in advance. Someone else in the family can get grammy's laundry.

Best wishes!

Hello and welcome to hw. 1st what gives with your husband thinking his issues are more important then yours? Is he taking meds for his problems? If your nodding off and slurring due to your meds and backing off isn't the answer there are meds that are designed to help with that.

As for all the running and work on you well you would be surprised how much you can do via the internet. Shop,bank,make appts,pay almost every bill that you have,make Dr appts,make use of it and give you some time to lie in bed.

As for everyone not understanding? Most everyone here has at least a few of those people in their life and some a life full of. Do you discuss the meds with them? Don't; the more they know the more they complain. I've found those who complain about my meds would complain about anything.

Don't give up your quality of life for others that don't understand.

Vickie

Post Edited (nvrthesame98) : 2/4/2013 3:49:21 AM (GMT-7)

Hi superglue & welcome to the chronic pain family here at healingwell! I'm glad that you have found us but am sorry for the reasons that brought you here..

As previous members have said, many of us CP patients deal with this. I also suffer with this problem & here's my advice, it is absolutelyn no ones buisness what you are on besides you and your doctor. The only person who knows what I am on outside of myself and my doctor is my mom. Not even my fiancé knows because of his previous complaining.

Good luck & I hope you stick around and keep us updated on your health and such.

My family doesn't know even a fraction of what my day is like. The ONLY person in my life whom I take advice from when it comes to my medication and my condition is my boyfriend of 5 years, and only because he's right in the middle of everything with me. He comes to all my drs appointments and everything.

When I was falling asleep a lot, it ended up being as a result of taking my anti nausea medication more than usual.

I wouldn't automatically assume it's the pain medication unless you talk to your dr and that's the consensus. It could be any number of things, or medications.

Also, don't let your family talk you out of medication you need to have a decent quality of life. It seems to be REALLY easy for people who rarely experience pain to suddenly have a TON to say on the issue if given a chance. At this point I simply say "what I take, when I take it, and how much I take is a personal matter between me and my doctor. If she feels like theres an issue, she'll let me know. Please mind your own business" and then I change the subject or walk away.

Definitely keep us posted and welcome!

Im so glad your Drs going to call you back and try to give you some answers. If you post your meds someone may see a problem such as two meds taken together that increases the lethargy and many many times this is the case and has absolutely nothing to do with the narcotics per say. All of us here have decades together in experiences with meds to treat pain and pain related depression and side effects of meds we already take or have taken,most of us have done more research and actually experienced more drugs and their side effects and interactions then well Pharma-purdue has!! Lol

We certainly dont take the place of your Doc but I have found with my great Doc and the advice and input from friends and posters here I have been able to lead a very productive and less painful CP life raising my kids to boot.

Not to be prying or rude but pray do tell what kind of Doc allows someone(hubby) with neuropathy in their feet to lie in bed 24/7 making his issues that much greater? He should be in therapy of the physical kind,the other never hurt anyone either but he should be on some type of exercise program at least as well as avoiding any prolonged stasis such as lying all the time.

Me thinks family should worry about themselves a little more and as it seems to me you have it going on and left them behind in terms of medical treatment and trying to take better care of yourself and increasing your quality of life. husbands quality would be where they should be looking to in my opinion,lying in bed 24/7 can cause all kinds of trouble healthwise.

Good luck to you and keep that chin up and your about to go to surgery so getting off meds at this point isnt even thinkable.

Hello My Friends, Sorry it's taken me so long to give you an update. Always have to wait on doctors to call you back. They did change one my meds. My diazepam. From 1-11/2-1-11/2. I can tell a difference. My pain level is still up there, but I keep pushing on.I am trying to keep my chin up but for some reason I keep having crying spells. My doctor said that most of all my pain is coming from my back. I am in a back brace and will continue to be in one for 3 months after my surgery. I thank you for your prayers, I know they work.  Tomorrow would have been my mom's 74th birthday. I thank God she is in heaven and in nomore pain. I will continue to keep you in my prayers. Sorry my message is so scattered. Time for that lovely pain medication.

Will say prayers of healing and hope your resting at home from the back surgery...what my pschologists told me some years ago, make your husband hold a ice cube when it starts to hurt to continue to hold the ice cube and explain that is how you feel everyday with your pain and that unlike the ice cube you do not get any relief...bet he can't hold the ice cube for over a minute...but, he should understand better...if he's still not understanding might be time to consider a divorce because he's probably not going to change and you need your meds to have a life...I'm functional on the meds I'm on and they keep me going, otherwise I would have no life, maybe its time for your husband to see a doctor so he can get functional again as its not good for him to always be in bed!
Prayers...