I'm new here, just joined today... I've been dealing with chronic pain for the last three years due to DDD, bulging/herniated discs, spinal stenosis, sciatica and severe nerve pain. I'm a wife and mother of two teenagers... I miss being an active member of my family. I went from working full time, keeping a house clean and organized and active in my kids' lives to being a permanent fixture on my bed, zombified by pain medications. I'm wondering if anyone else has been in my shoes and if there are any suggestions that would help pull me out of this funk? My family and friends are supportive, but no one really seems to "get it". Thank you.
Welcome here hon. I am fairly new to this group as well. I have been through many meds and experience the zombie syndrom too. I have chronic back pain and am on a 9-12 month waiting list for a pain clinic appointment, so it is really hard not to be feeling useless. But i contine being patient and hopefull. People are kind and quick to answer questions and their compassion is so genuine. So glad you could join us.
Yes, I know very much how you feel (as much as any one person can about another) I am in much the same boat. I hurt my back at work in 2004 and my life has been very changed since that day! I, too, have DDD and a herniated disc plus facet joint problems as well. My difference is that my family is not that supportive. My husband seems to think I use pain as an excuse not to do any housework (in spite of the fact that I did secure a very good, and rare position in my field, desk job and continue to be the major breadwinner in the family) I can no longer do the kind of work I did before I was hurt. I do go to pain management which helps make life more livable. I dont think I could even do my desk job if werent for my meds. I take a long acting drug so I dont feel "zombiefied" like you do on short acting drugs. I do have short acting for "breakthrough" pain. I, too, have two teenaged boys who have a hard time remembering before I was hurt.
Dont expect you family to "get it". Most people who do not have this kind of pain have no idea. They think they do but they really dont. I gave birth to two children and was deathly ill during both pregnancies and that was easier than the chronic pain I live with day in and day out. People dont understand why you cant just "shake it off" or "ignore the pain". They dont understand that it is not that kind of pain. This kind of pain encompasses all you are even when you try not to let it do so. I read a lot to help "escape". I am having weather changes in my area and have been having a rough time of it myself. I have been having a lot more pain since my pain doc decided he needed to cut my meds back considerably last June because he was worried about being targeted by the DEA. Before that I had been functioning pretty well on my former dose for several years. Our society is swinging back to the general idea that pain should not be managed with opioids any longer. I used to be very active too. I used to enjoy hiking outdoors, shopping, gardening and all of that has gone to the wayside because of pain. I feel too young to feel so old! You just have to make the most of the good days and do what you can on the bad ones. I use a lot of heat to my lower back. Epsom salt baths help sometimes too. I try to walk when I can. This site has a lot of great people on it and you will always find someone who understands on here!
Welcome! I've found this to be a wonderful place to find answers, support, encouragement and friendship. I hope you do as well.
It's hard for those who don't suffer with chronic pain to understand those of us that do. Just as it's hard for us to move from active lives to lives that are often forced to be inactive. But cooking and cleaning isn't what makes you a worthy family member. It's your love, your warmth, your humor, support and encouragement. Remember, those things about you haven't changed. You may dispense them from the couch instead of standing in front of the stove, but as long as you're there to dispense them does the location really matter? You do what you can for them on your good days and love them from the bed or the couch on your bad days. What's important to them is that they know that you love them, good day or bad.
It's important to find a good pain management Dr to work with you. Perhaps switching to a long acting pain medicine with something immediate release for the breakthrough pain will help reduce some of the drug fog. Try anything you can - physical therapy, aqua therapy, heat, acupuncture, a long soak in a hot bath... you get the picture. But above all, forgive yourself. You didn't ask for this, wish for it or do anything to bring it on yourself. So stop blaming yourself. You are still a viable and important person and don't you forget it!
Come talk whenever you need us. We're here and we know what you're going through. Best wishes to you!
Hello pirate princess. Sounds like the name of a hero. To your family you are a hero. You are dealing with a difficult condition and remain available to them. And as far as husbands go just remember they did not get our nurturing gene. They got the protective gene. So to speak. My husband does what he can to help, generally in a manner that makes sense to him, but not so great for me. At first we battled on simple things, like stop stepping on my oxygen tubes. His thought process was I am bringing you something to eat, what tubes? Men provide because that is what they are taught. Women want someone to hug them and say it will be ok and we will work on it together. Guys learn if we are kind and patient. Not so easy to do when drugs haze out thinking and we are barely hanging on to self control.
I have found opiates hard on me. They affect how I react. I get crabby and hyper. For some they get sleepy and loopy. However it goes, and it can change through the day, when the rest of the family does not understand we look pretty unstable. They don't understand how we are fighting these feelings, the pain and the depression of our lost dreams and freedoms. So we educate.
I suggest that you take an appropriate antidepressant and work with a therapist to help get out of the miasma and confusion of the meds and your condition. No one is able to do this alone. No one. We just fool ourselves. Listen to what those close to you are telling you. Sort through it and hear the common message. Your funk is the depression of grief. The loss of what you had. New goals need to be set. New ways to do things.
It has been over seven years that I have had this auto immune disease. It slowly, yet steadily progresses. What I could do even two years ago is no longer attainable. Six months ago no longer can do. i spend the day on my bed. During this whole time, no car, no job, have to find a ride to get to the store four blocks away. Loss of income, and so forth. I found there are things I can do. I am available emotionally for my daughter, husband and all the friends I have made here and elsewhere. You can do the same and share and support others. You can make a jig saw puzzle or knit hats for new borns, hospitals love them. There is much left for you by looking outside yourself. And when you do that, you don't hurt so much.
Talk with the doctor, as others have said and get yourself on a better med regimen. Life hasn't left you behind. You simply forgot where to look. Joy surrounds you. the weather will change, and so will you. Karen
I have had degenerative joint/disk disease (diagnosed in 2001) for years now and eventually recommended to a pain management specialist. Until then I was given all the pills on the market and off the market. Eventually when the pain management team zeroed in on my problems they have at least attempted to try and do something besides over the counter remedies. I have received shots, nerve blocks and other treatment which helps a little. Currently I am seeing an acupuncture doctor who is helping my upper back pain but I still have other issues which the pain management team is attempting to treat the best they can. I trust their judgement after doing research on my condition and finding out options available to me. Education is the key in learning more about your specialized condition and the pain management team helps as professionals. I have got to give them credit for doing what they know best.
Some of the medications they recommended have not worked for my particular condition but other treatments have. After years of NSAIDS I find I can no longer take them because they cause stomach problem which have recently developed. I have had 5 surgeries with metal being implanted and then removed when it impinged on a nerve. My orthopedic surgeon has been fantastic with the treatments he has done to help. Other doctors I have seen have talked about the possibility of paralysis but my orthopedic surgeon has done all my surgeries without complications including spinal stenosis.
Research what you know and then seek a professional who has access to a pain management team. The combination of both teams help focus on the issues at hand and don't let the appointments go too far apart. Stay on top of what you learn and keep yourself active with a doctor you trust. Both you and your doctor will get a better education and understanding of your diagnosis as your condition progresses.
I hate having so many doctors appointments but I would rather learn more about my condition then complain about it, besides no one want to hear me when I complain. I have outlived all my family and friends but I must be here for a reason and I am not asking any questions in that area.
Pirate Princess, I too want to welcome you to this site. I have been a member for some time now, & it has helped me through many of my pain problems.You have already seen there are so many of us that suffer with the same conditions that you have. I have had this back pain for 44 years due to a messed up back surgery, that has gotten worse over the years. I had to work for many of those years to raise my three children as a single mother. Things became worse for me, & by the time I was 40, I wasn't able to continue working anymore because of more issues with my health. It was very hard to accept that I could never work or be a productive person again. Finding this site has been like a life raft for me. I found I am not alone with all my problems, plus I have been able to help support others with similar conditions and problems. I was so happy to read your responses to others that this has also helped you to undestand that you aren't alone. The others are right.
No one that hasn't suffered the kind of pain you have understands unless they have been through it themselves. They may have some empathy, but still they do not understand. You have gotten so many good responses I have not a lot to add, but wantedto welcome you to the site, & hope you stay with us. I agree with Dzoo about getting on a long acting pain med like MS Contin or Oxycontin with something for breakthru pain. I don't personally use this. I take oxycodone 30mg evey 4 to 6 hours. I like it this way, & my pain management doctor has agreed to treat me this way. If I have things to do that require me to drive or be completely alert, I wait til I have these things done to take my pain med. I don't think with the long acting meds this is as much of a problem, but it's just the way I like it. You are never alone with your feelings, and anytime you are feeling down or just ned to talk, please let us know. You'd be surpirsed at how much this site will come tomean to you as it has me. I have made quite a few close friends too. This is kind of hard to believe from a web site, but it's true. Many of my firends also sufferfrom chonric pain, & some don't We just hit it off & became fast friends. So please stay with us. I think you will find the experience a great help for you...
Hi PiratePrincess, I get it. Where you now find yourself was my life, for about five years. I stopped taking my OxyContin, (3 years ago) as I was a "shell" of the woman I once was. I felt robbed of my very soul! I lasted one and one half years off of medication, the pain got the best of me, and I ended up back on pain meds, but this time it has not 'zombified' me.
Perhaps there is a chronic pain support group in your city or town?
Isolating yourself is one of the worst things you can do. You will feel cut off from humanity itself. You could try the old fake it til you make it philosophy. This may sound trite, but just get out of bed and do what you used to do, your old routine, perhaps a long hot shower and get dressed in 'real' clothing, not your pajamas.
I know how you hurt, I suffer from the exact things you are suffering from, except for stenosis.
But my fibromyalgia and horrible nerve pain (neuropathy) are endless, and keep me in 'hair on fire' pain all day, every day. I find if I keep moving, doing the things I used to do, focusing on anything other than the pain, I am pretty well off, with my medication of course.
I feel for you, my heart goes out to you. Are you depressed? It certainly sounds as if you may be down in the dumps, or staring into the dark abyss of clinical depression. If I'm wrong, I do apologize.
I would guess that some therapy would do wonders for you. Find a good physcologist and do some talk therapy. You CAN get your life back, become unzombified. If I did it, you most assuredly can do it!
You are intelligent and kind, from what I've garnered from your query. Tap into those qualities and find your soul again!
Wishing you only the very best,
Mac P.S. welcome to the site!
I KNOW it is annoying to be in that funk of pain. I have felt it myself but cannot let it get the best of me. I cannot give in to the psychological issues of pain, only to know it is there and I want it to go away.
I have been told that I will never be pain free from this degenerative joint/disk disease but I just want a break once in a while. That is where the real challenge comes into play. On a bad day, after I get a rub down and take medication, I have to focus on something that will take my mind off my pain issues, like a stupid movie or music that I like or anything that can distract the moment of pain for just a short time. Once you find that secret, you will see how strong the mind can become related to pain issues.
I hate constantly going to doctors appointments and treatments that don't work but it is better than nothing.
You have a person who is listening and who understands pain issues here and many more supportive people who want to lend an ear. Sometimes reading the posts is a pain distraction and if just for the moment, I realize I don't feel the pain while I am reading, it shows me that distraction can help. Anything, just for the moment of pain distraction so pay attention for those precious moments.
Keep yourself strong after all, the mind is not destroyed so use it in the best way you know how and you have a voice here that is willing to listen and understand...
To all of you who have responded to my question...
I can't begin to thank you all for your words of encouragement!! I never knew that "strangers" could have such a huge impact on my life!! As I sit here, typing through tears, I feel like I've been thrown a lifeboat by ALL of you. Saying "thank you" just doesn't seem to be enough. I honestly feel sooo much better after reading everything you all have said. I hope that, in the future, I am able to be there for all of you and bring comfort as well.
As for my depression... I was on Paxil for a little over the year. One day there was an "oil spill" accident in my bedroom and my just-filled prescription was accidentally scooped up and thrown away. Of course, I didn't realize this until I went to take the pill the next night, which was a Friday. The next 2 days were unbelievable!! I experienced withdrawal symptoms!! I never knew that you could have withdrawals from an anti-depressant!! I woke up, screaming from horrific, extremely vivid nightmares. That was just one of the symptoms I experienced. I called the doctors office first thing Monday mornning and told them what had happened. I was told that I would get a call back, letting me know what the doctor said. By late Tuesday afternoon, I was literally freaking out by the symptoms I was having. I called the office again and was told the same thing. I threw a fit!! It didn't do me any good. By the next morning, however, I was feeling better. I decided then and there that I was done with that medicine and vowed to never take an anti-depressant again. I should mention I was taking it to help with my anxiety and panic attacks, too. I called the office again and finally spoke to the nursse. She informed me that the doctor had actually called the refill in late on the Monday night that I had originally called on. Needless to say, I WAS TICKED OFF!! So, that's why I haven't been on anything else. I'm sure there are other medications out there that can help, it's just a matter of getting an appointment with my PCP. The doctor I was seeing moved to the east coast in July and they've been actively recruiting a new doctor to take his place. I live in somewhat of a small town in northern Arizona so I understand why the office is having such a hard time. I did hear that they have a P.A. there now. My insurance just got reactivated last Thursday. I plan on calling first thing Monday morning and getting my bottom in there asap!
WOW!! Sorry about writing a novel here!! Once again, THANK YOU SO VERY MUCH FOR ALL OF THE WORDS OF SUPPORT, ENCOURAGEMENT AND REMINDING ME THAT I DO MATTER!! I am ECSTATIC that I have new friends who are understanding. Thank you all for accepting me... for me.
welcome to the site!you will find a lot of helpful answers from caring people on this site!i too know what it's like to live with chronic pain.and it's no fun!and i think we all feel useless at some point in our pain!but every memory you make with your family is a treasure !i can't do much due to pain or trying not to cause myself more pain but every chance i can i spend time with my children and grandchildren!making memories !!don't let this pain keep you down!!keep looking up because things do get better now and then!!i am in the process of getting my pain meds changed i have been on 75mcg's of fentanyl patch every 72 hours and 15mg's of oxycodone 4 times a day and 250mcg's of fentora once a day for over a year now and it's not helping my pain like it did!so either my back is worse or the meds aren't helping and needs to be increased !and i'm on pretty strong meds now !but they are days when nothing helps my pain!praying that all ...
works out for you!you might need something for depression most chronic pain suffers need help now and then with depression!!
Hi, Well I am not sure I can add much more to what advice and comfort you have gotten from the responses you have already. But I also welcome you to the site and you will spend many hours making new friends, and soon you will bond with some more then others. You have picked a great site for the support and love you will always receive, read other peoples blogs and even if you can not answer peoples questions, just saying Hi to someone will give them support because you made the time. Just remember how you felt when you first joined, take that memory and remember how you felt when people started to give you those wonderful messages and when you find the time to answer you too will help those that were in your situation and it it will help them too.
Pain is a hard one to handle, I too suffer and once was a working mum. It took many years to give in to a helping hand and to feel better about just letting others do the work I used to do so well. As others have written, you are still a worth while person you just have to learn to do other things in the family that maybe isn't a great deal to others but to yourself if you are doing things and trying to show on those not so bad days, just try and do a bit more then normal. Yes you might hurt more after doing so, but it will show at least you haven't given up and your still fighting for as much independence as possible.
I am not sure If this has helped you much, but remember never give up you are a strong women with challenges and remember if others want to make you feel bad about your situation, chances are they are not in pain like you, and just try a rise above the comments. Stay strong and always fight and never give up on the things that make you happy, well good luck to you and welcome again to the site. Liz.
Hi, I have the same things. I am a wife and a mother of two teenage girls at home. I know what you are talking about. I finally (I think) found some meds that help. I am takeing up to two Vicodin every 6 hours and I take 1800 mg of Nurontin a day ( 600 mg three times a day) for the nerve pain. Also I take a muscle relaxer at bed time and during the day if I need them. I also have tramadol for extra pain releif if I need it. Oh and also on 30mg of Paxil. Yea its a lot but so far I can do more things then before. I have been on Nurontin for about 4+ weeks and so far so good. I still have some nerve pain but not as much at least as of now. It may be to early to say... I havent had a real bad day yet. I am not sure but it may be cause more night time headaches. They go away when I get up and get moving but sometimes leave my head hurting for days. I have DDD and Osteoarthritis. I have had one surgery on my neck..a fusion fom C2 to C6.
Now I have problems at C7 to T1 and problems at L4 to S1. I need an new MRI for my low back but it seems all this cost so much money. I have had epidurals in neck and back and also Facet injection and other injections... they are some time very short lived is any help at all.
You are not alone. Good luck. Would like to keep up with your progress.
I'm brand new here but love it already. Yes, I totally feel like I am totally worthless because of my pain. I have DDD, failed fusion, discs just totally gone and I don't think I have a good disc in my spine. The same as you, DDD, bulging/herniated discs, spinal stenosis, sciatica and severe nerve pain are with me always. My fusion was done in 1989, failed soon after and I've been chasing pain relief ever since. I have a pain doctor who is good but cautious, my pain is still not under control even with major meds, I use a walker when I go out and if there is much walking, and it doesn't take much, I use a scooter. My hubby is disabled too but in better shape than I am so most of the cleaning falls on him. And no, no one "gets it" unless they are in pain too, not even the doctors. Do what you can and don't worry about the rest. There must be a reason that we live in pain but I can't think of it, lol.
Above it all, don't let it get you down too much. It really won't do any good to get down about it anyway. Do something different to get your mind off of your pain, or at least try.
Are you on disability? If so, try to get Medicare to get you a Scooter or power wheelchair, it will allow you to get out of the house and you will feel so much better! I stay home most of the time but once in a while I tell hubby that I am going stir-crazy and we load up the scooter and head for Walmart, yippee! It does lift my spirits some. You will need a writen diagnosis from your doctor but most are good at doing this. It will lift your spirits, even if you just go for a short while, try it! And while you're there you can have lunch! Yum, yum!!!
I hope you enjoy everyone here, I have and I've learned so much from everyone. Wishing you less painful days. Take care and smile!
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