Posted , 5 users are following.

hi, I just don't know. Everyday seems the same. Nothing means anything life sucks. I just don't know what to do.i can hardly leave the house and when I do it's seems pointless. My health has taken over. When I get medicated and relieve some of the pain I am zombie when I'm not medicated I'm in to much pain to do anything. I can't talk to people in person because I usually break down emotionally. My family is so numb to my situation it's like they don't care anymore. I guess I just can't adjust to my life outside the hospital and I have nowhere to turn. My happiness is when I get emails from these forum,sad! It's like life is already over it doesn't matter what day it is or what time it is. I spend most of my days paying online solitaire. I really don't know how much more of this I can take. Hopelessness! Oh well, that's how I fell

0 likes, 17 replies

17 Replies

  • Posted

    Gary. Meet your sister today. What you just wrote is my life right now. I had massive argument with my husband today. I am very deprsssed. Can’t take meds for it as too chemically sensitive. I feel so alone. I look in the mirror and I just see dead eyes ? It’s a terrible disease.  I am hoping my email back at least cheers u up that you are not alone as I do understand it.  I don’t have much advice just to say chat to us here. 
    • Posted

      HI Brenda, ya my wife of 25 years left me months ago. I dont blame her. She still comes around once in awhile to check on me and make sure I am alive plus our daughter is still with me. But ya I can't even look in the mirror. Thanks so much for responding.  Gary

  • Posted

    I'm so very sorry, I know how you feel all too well. I've had CRPS almost 5 years. Its exhausting, frustrating, and knowing everyday will be nothing but pain is so overwhelming. I've seen many different pain management Drs. treatment after treatment that didn't work, I finally found one who decided not to keep putting me through torture. All we can do is be our own advocates and fight to find the help we need. Unfortunately no matter how much you try to educate others, which gets annoying, noone truly gets it. You don't understand it until you get it. I've lost friends but gained many new friends online that also suffer from CRPS and those new friends are amazing. As much as I'd like to just give up i push myself every day. This disease is total bulls**t and I refuse to let it take all of me. I'll keep walking until my legs finally give out.

  • Posted

    I have not been on the boards in a long time.  Gary made me want to jump on though as I get e-mail notifications and I remember feeling just like him a few weeks ago.  I go through cycles of up and down with my moods.  Sometimes I am just crushed and other times I just keep one foot in front of the other reminding myself that s**t happens.  Terrible terrible s**t, but what is done is done.  I have to keep going.  My family too seems very uncaring or desensitized about my crps.  Can you blame them though?  They see me in pain, cannot do a damn thing about it, so they try and just 'ignore' (per say) and treat me like normal.  I do not get the extra concerned looks or phone calls asking how my day is.  crps is just old news.  I am glad in a way because I do not want my family suffering along with me.  My boyfriend on the other hand deals with it all day in and out.  It is dramatic for him as he is helping me do things like getting dressed, extra chores, and helping me stand.  Figured that would happen in 50 years into our relationship, not 2.  He is good about it though.  He also 'ignores' the crps for the most part.  Honestly, I am relieved because being asked how can I help or are you okay was getting a bit old.  Especially when the answer is....I am in agony and there is nothing you can do.   Just makes them feel worse.  Makes me feel worse.

    Gary, I am sorry it is kicking your ass so hard.  I try very hard to keep things in a positive light.  It is so easy for me, someone who has had depression near their entire life, to just grumble and tuck myself under the covers and cry.  I just have to push.  I cannot let crps win and control what life I have left.  Crps can win some days, but I am going to keep most the year for me.

    • Posted

      I am almost at year three with my crps.  It has progressed rapidly from just being my foot ankle to the entire right side of my body, left hand, left foot/ankle, and now the doctors are concerned it is affecting my internal GI track.  I have already had one doctor discharge me after trying a few treatments that did not work and was unwilling to help try to keep me comfortable.  I am had a second doctor down right refuse to help me because my case is so bleak.  I have had my physical therapist discharged me saying she is scared to touch me and that PT is just making me worse.  I have literally had terrible side affects/allergic reactions to every single medication they have tried from loosing my hair, terrifying hallucinations, losing my ability to do basic tasks and thinking etc.  And of course we all know that no one knows what crps is and outside our loved ones and those who live with or work with it (not even all of those) no one seems to give a damn.

      Crappy three years and now I have to go through tests to see if all these medications have damaged my stomach and intestines or if crps has gone just another step deeper.

      I think if I was alone I would be losing my mind.  But understanding that my family is going through an impossible situation knowing crps is impossible in itself......I understand why they distance and act like nothing is wrong.   I have two people in my family I use for my heavy days.  My grandma for medical talks and understanding that side.  My boyfriend for the emotional hell that gets to much.  It helps, but we have to help ourselves the most.  Normal people just do not know what to do when faced with something that has no solution.   If you do not have those people in your family, there are actually pain psychologist who understand that depression/mood/anxiety brought on by pain is an entirely different level than I am sad because I have a terrible job.

      Also, I try and do as much as I can.  Helps me feel a little better.  A couple dishes here and there, cleaning the bathroom (takes 2 hours for one sink and one toilet), but damn it I am going to be useful until I just simply cannot move anymore.  I am not happy that I am slow, but I can still and when I cannot.....well than I know that I did my best.  

    • Posted

      Hey everyone, I relate to every word written. I have been up and down for years the downs are just stronger than the ups. I have found these forums  are a wonderful release letting out to all you wonderful people that truly understand . Thank you all so much, Gary
    • Posted

      It's a better day today. A nice day outside here in Lake Tahoe. I'm going to try break out the walker tie down my poodle to it and see how far I get. Have a good day

    • Posted

      Hey Gary,

        Glad today is better.  I know those lows are terrible.  Hope the walk goes well.  I am practicing walking with my australian cattle dog.   She runs ahead and I hobble slowly with my cane.  She is always quick to check on me and wonder why I am so slow.   Always here for you

    • Posted

      Great Gary. One day at a time. 

      Lake sounds amazing. Irish weather starting to turn warmer thanks god was a long damp cold winter since October 

    • Posted

      I have the beast 2 year in July. But it’s full body now and head face. 

      I have 3 sons so they keep me busy and sane ! My 2 year old is a challenge but maybe he is my saving grace too as I have to move to mind him ! Pacing is a huge challenge for me wirh young kids. 

  • Posted

    Hello Gary, and all!

    I've been away for a bit, as I've been incidentally diagnosed with a brain aneurysm... Going today for a CT-A of the brain so we can figure out a battle plan.

    I so feel you, when you say that one day is much like all the rest, all melding into one big panorama of pain, inability to do much of anything but just survive, and that bleak sensation you get when you realize your loved ones have just become numb to your suffering as a result of the CRPS situation going on for so long.

    Reminds me of when we kept laying ducks here at home: The hatchery had sent us a 25th day-old duckling that was small and weak compared to her "sisters". They didn't charge us for her...I figure the packer felt sorry for her, and rather than put her down or let her die in a box in the corner of the warehouse, he/she shipped her to us so that maybe, somehow, she would have a chance at some kind of life, however short.

    She actually started to perk up, but we had to fence her off from the rest of the ducklings in her own little chicken wire enclosure, or the others would have taken her food and water, and stepped all over her in the course of doing business as usual. She always moved slower, and never got as big as the other ducks, but she held her own, got integrated with the flock at age 6 weeks, and didn't start to languish again until the weather turned cool in the fall. Then her voice got breathy and weak, and all she could do was rest off to the side of the duck run. The bossier ducks started going over and trying to make her stand, and walk: Two of them would grab her gently by the neck, one on each side, to raise her up, but she just collapsed into a sit as soon as they let go. After a few days, they gave up on her and went about their business as a flock as if she was invisible. Yet she still got comfort from being close to her flock mates. One day, she just passed away quietly, still sitting near her mates under our old apple tree.

    I cried. I don't usually cry over deaths, as I'm a hospice nurse and farm kid who has seen literally hundreds of critter and human deaths in my lifetime. But this one hit close to home... I didn't realize that I'd been trying, underneath it all, to sort through what exactly my place is in the family, as well as the community and world at large: On its face CRPS takes away so much from not just the patient but everyone around them. Things you took for granted, and your family took for granted, are now impossible or changed almost beyond recognition. It's easy to feel as if life is passing you by, you are now redundant or downright invisible, as if you have died but are strangely still present, observing the world get on but without you in it. 

    It shakes you to your very core, makes you question whether there's any meaning to any of it anymore. And at a time when your energy levels and your pain are sapping your ability to cope.

    As hard as it may seem, we have to find a way to put meaning back in our days. It's going to be different for all of us, as we each have some unique challenges, but it's the only way forward for us, and for those we love.

    Ask yourself: If I didn't have CRPS, what would I do to be a better person, to help others, to make the world a better place? And once you know the answers to these questions, find a way to do even just a tiny bit of whatever it is you believe is the way forward to a better life for you and those around you. It may just be vowing not to speak critically to others, but instead to be compassionate always. This takes little physical energy, but over time, will move mountains. It may be growing extra tomatoes in a raised bed (if you're not so good at standing up for long) and giving them away to neighbors with big families, or elders who can't garden at all, etc..

    The possibilities are endless.

    On a side note, I started taking dextromethorphan with guaifenesin about a month ago; if that sounds familiar, it's because it's an over the counter cough and cold medicine, cheap as dirt. Dextromethorphan is an NMDA receptor antagonist, like ketamine, though not as efficient in its action as ketamine. But if for whatever reason IV ketamine is not possible for you, it may be worth giving a try. It helps with pain and panic management, as near as I can tell. I don't think that it is ever going to be anybody's main pain relief strategy, but it is a great adjunct in small doses. There are some studies in the medical literature about this, if you're interested; seems to help manage hypertension, too. The trade off seems to be a little extra fatigue and dizziness, but after the first week, totally manageable. Check in with your doctor, just in case.

    Thinking of you guys. Hoping for better days to come, in the very near future.

    Onward and upward.


    • Posted

      HI Sabrina, I wish the best with the  ct scan.i had a rare form of brain damage called central pontine mylinosis spent almost a year in hospitals and I am permanently disabled now can't walk or talk like normal anymore. Loved the duck story. I hear what your saying but those questions are so hard to answer. I don't know why we fight so hard to live, just to what to die. I have been trying to take short walks with my old poodle(princess) I call her princess of darkness or Ozzy for short. I have never heard of those meds. I will look into them. It's the roller coaster of emotions mostly bad. Medical marijuana dose help but only for short periods of time. And I starting to get bigger. Good luck with the test. Talk to ya all later, Gary

  • Posted

    Hi Gary. Sorry you having such a terrible time. All i can say just take it day by day. I know when the pain is so bad every second can feel like a day(sorry not really inspiring u biggrin. I'm sure your family cares. They probably also feel helpless. As you know it is hard for others to understand unless they have gone through it. It is also hard to see a loved one in pain. You know your emotions can increase your pain. I know thats true in my case. If the pain meds make you a zombie maybe u need a different med. U should be on time released and also have separate pills for breakthrough pain. I think u should see a therapist to help you right now. I saw one the first few years after i was diagnosed. I never thought i would have any good days. I use to have nothing but horrendous days where i didnt care if i lived or died. Here it is 19 years later and i can tell u it does get better. U have to keep moving that is the key. No matter how hard it is, keep moving.

    Hope u are feeling better. Take care.

    • Posted

      Mary. I have employed cleaner a few times a week in my home.  I was sick of watching someone do it while I am here. So Saturday I did it myself.  I am really in a bad way. 24 hours later. The fatigue. The pain is everywhere   Spasm innmy Head and neck.  How do you manage house work etc. 
    • Posted

      I drop my laundry off and get it washed and folded each week. I rent a studio. So i dont have much to clean. I find that epsom salt baths help sooo much. When i was at my worst i was taking 3-4 a day. Plus you cant do to much at once. I use to do my laundry it was to much. Do chores in increments. Take breaks. I actually made it back to work after being out for 1 yr 19 yrs ago. I call in sick alot. Its not easy getting up. I have a hard time with coworker bcause i call in sick. As u know unless u r bleeding everywhere people do not believe u r in pain. I hardy talk or complain about my pain at work. They dont believe or care anyway. I am fortunate i have a great family. There are days when i am crying from the pain as i am working and no one notices. I just know i have more good days than bad compared to years ago. My neurologist said to me years ago that RSD goes out like the end of a symphony. Meaning is slowly over the years gets better. Do the pain meds help u? The muscle spams r the worst - like u r being shocked or zapped. Try the epsom salt bath as hot as u can take it. U will have to lower your neck all the way into the water. 😄😉FEEL BETTER.

    • Posted

      Thanks Mary.  

      I have this two years. I take bath every day night increase it. I can’t take meds as I am chemically sensitive. So yesterday on very bad day only took paracetamol. Was trying ketamine oral but very drowsy.  I have infusion of ketamine this week.  Hope it stops this massive flare.  I have 3 young boys ! They are great.i am still out of work but would luv to return.  Miss my career. Praying each day for cure or to feel better. I better get my lady back to clean house 

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