Living with pain

Posted by bear338 @bear338, Jun 24 7:09am

I have lived with some type of pain almost my hole life first as a child then as a adult which I did to my self because of happened to me as a child but maybe that’s why I am still here either I am to stupid to give up or my past has made it possible for me to endure the pain I am in now the problem is that I know that I have a device that could and did stop my pain for 21 years until my doctor turned it off with every telling me what he did or why so I now wait for my new doctor appointment but that is not until the sixth of July all I can say is ask about everything before they do anything to you because the alternative is hoping that the person won’t harm you . Because you are the one who will be living with what ever they did not them, I know that this seams hostile and it is but it is also a warning of things that could happen.

@bear338 I read a lot of pain in what you've shared, both physically and emotionally. I am so sorry you had to go through pain as a child and that you've seen pain follow you through life.

From the emotional pain standpoint, I am wondering if you've ever considered talking to a professional about your childhood as a way to try to find healing or at least closure for that part of your life?

From the physical pain standpoint, I am wondering what device was shut off and if you consented to it?

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@amandajro

@bear338 I read a lot of pain in what you've shared, both physically and emotionally. I am so sorry you had to go through pain as a child and that you've seen pain follow you through life.

From the emotional pain standpoint, I am wondering if you've ever considered talking to a professional about your childhood as a way to try to find healing or at least closure for that part of your life?

From the physical pain standpoint, I am wondering what device was shut off and if you consented to it?

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Thanks you for your words I had a chance to give forgiveness to to the person who had done the things to me as a child he was my grandfather who told me that he was sorry for what he had done to me as a child it was mistake that he had made with his own son that made him the way he was he trying to make sure that it did not happen again so he went the other way to the point where he would beat me with a strap but I would not cry so he would do it even harder but the worst was when he broke my jaw and the doctor never asked what happened to me he just put me to sleep and when I woke up my jaw was wired together but when I was back to see him we became very close and I hold no hatred in my heart I actually came to love him very much I would go back to help him as much as I could but he passed away in 2002 about my father is a different story he has caused the most pain and damage that will be a different time for now I hope this gives you some look at what I lived with please ask me anything you want

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I have a video visit this afternoon with the Pain Clinic in Rochester. Hopefully I can get some pointers on my fibromyalgia pain and maybe neuropathy numbness and pain. My fibromyalgia has been bad with teaching kindergarten this summer in a Summer Readiness program for the public schools here. My level is averaging an 8 almost everyday and I have been having difficulty with sleep. That is when the neuropathy pain seems to chime in.

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@suzanne2

I have a video visit this afternoon with the Pain Clinic in Rochester. Hopefully I can get some pointers on my fibromyalgia pain and maybe neuropathy numbness and pain. My fibromyalgia has been bad with teaching kindergarten this summer in a Summer Readiness program for the public schools here. My level is averaging an 8 almost everyday and I have been having difficulty with sleep. That is when the neuropathy pain seems to chime in.

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I can relate to what you are saying there are things that can be done to help you, unfortunately you will need to find the right answer bye not just taking whatever the doctor said if it didn’t work for you then you need to keep looking there are things out there that can do a lot to help, When my nerve problems started I knew nothing about what could be done after two years of this treatment or that one I thought I would be in pain for ever but after the test for the pain pump I was pain free at least for two days so I got my pump done 21 years ago and it worked so keep looking and keep a list of what has been done so you can say what has done and what worked best for you and it will help you fine what is best , you don’t be afraid to speak up and tell doctors how much it really hurts I know from my own pain that I played thing down when I should have just said that I am in a lot of pain but it took me having pain that would not stop before I gave in and said that I need help and what was really happening

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I just saw a new doctor today waited a month to see but what I was told did not give me the answers I was looking for or that could fix my problem the answers I was given were that he could do the same thing but no one seams to know or care that what has been done to me and the pain I am in I am lucky if I get two hours of sleep I go to bed with my legs feeling like I am rapped up in a Electric Fence then it feels like someone is drilling into my legs and this goes on all the time if I-am awake then there’s my lower back it feels like I am being bent in haft and this all started because I told them that there was a problem with my pump but I was in less pain before they did all this .I know that if it was them dealing with I am then things would be different but now there’s no urgency they say in August that they will start when it’s time for a refill but I have been dealing with this for over 40 days already I know what it could do and did for 21 years but now I’m done waiting so if I am going to be in pain then I won’t have to deal with the other things that come with the pump so I am contacting the surgeon to have this thing removed if I am going to be in pain for the little time I have left then I choose to not have the problems that go with having a pain pump so I have sent a message to the surgeon for an appointment to remove the pump and I will deal with the pain on my own

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@bear338

I just saw a new doctor today waited a month to see but what I was told did not give me the answers I was looking for or that could fix my problem the answers I was given were that he could do the same thing but no one seams to know or care that what has been done to me and the pain I am in I am lucky if I get two hours of sleep I go to bed with my legs feeling like I am rapped up in a Electric Fence then it feels like someone is drilling into my legs and this goes on all the time if I-am awake then there’s my lower back it feels like I am being bent in haft and this all started because I told them that there was a problem with my pump but I was in less pain before they did all this .I know that if it was them dealing with I am then things would be different but now there’s no urgency they say in August that they will start when it’s time for a refill but I have been dealing with this for over 40 days already I know what it could do and did for 21 years but now I’m done waiting so if I am going to be in pain then I won’t have to deal with the other things that come with the pump so I am contacting the surgeon to have this thing removed if I am going to be in pain for the little time I have left then I choose to not have the problems that go with having a pain pump so I have sent a message to the surgeon for an appointment to remove the pump and I will deal with the pain on my own

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@bear338 Bear, I really don't have much to add except that i am going through something of the same. I have several genetic diseases (Gelsolin with Walker-Warburg, Clarkson's exploding capillaries, diabetes II, Cardiomyopathy (dilated and otherwise), cancers all over my body (skin, pancreas, prostate, leukemia, lung, esophageal, spleen, etc.) , Leukemia, anemia, encephalopathy, fragile teeth, blepharomailisis in my face, ptosis, …..). Anyway hang in there, buddy. I have been on several different pain meds, and Tylenol pm or Equate pm is best for me for sleeping. I have tried some cheaper brands, but they only work well for about 4 hours. They are just acetaminophen with a weak sleeping pill added. And the Marijuana pill I tried was not helpful. However, it was expensive. In our car, in the driveway, I could not find the brake pedal, so that cost us about $1,000. Gold Bond Psoriasis Creme with aspirin works well on the face for several hours. I alternate that with Noxema, day and night. Again, hang in there. Getting old and sick is not for weaklings. old karl

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@bear338

I just saw a new doctor today waited a month to see but what I was told did not give me the answers I was looking for or that could fix my problem the answers I was given were that he could do the same thing but no one seams to know or care that what has been done to me and the pain I am in I am lucky if I get two hours of sleep I go to bed with my legs feeling like I am rapped up in a Electric Fence then it feels like someone is drilling into my legs and this goes on all the time if I-am awake then there’s my lower back it feels like I am being bent in haft and this all started because I told them that there was a problem with my pump but I was in less pain before they did all this .I know that if it was them dealing with I am then things would be different but now there’s no urgency they say in August that they will start when it’s time for a refill but I have been dealing with this for over 40 days already I know what it could do and did for 21 years but now I’m done waiting so if I am going to be in pain then I won’t have to deal with the other things that come with the pump so I am contacting the surgeon to have this thing removed if I am going to be in pain for the little time I have left then I choose to not have the problems that go with having a pain pump so I have sent a message to the surgeon for an appointment to remove the pump and I will deal with the pain on my own

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Hydrocodone provides me temporary relief.

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@kenc

Hydrocodone provides me temporary relief.

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The amount of oral medicine I would need would leave me unable to live being able to anything else that is what got me to try anything and when I found the pump it changed my life but a doctor came along and well I will just leave it there I did get 20 years of relief and that makes it even worse but thank you for your concern I hope that you find the answer you need

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In reply @bear338
Bear my name is Rob, if you look around on the pain or digestive health situation section you will see why my mindset is like yours. I am so similar to you but have had longer level 8 and higher pain. I am not going to take space on this link going over the history but it’s awful. I will just say on the similarities is that I have had migraines that would come 2-3 times per week level 6-9 and then a usual level 2-3 band always around head or in back of head and neck since 1997 and stomach pain since 2001. That pain is like an ache from not eating for a day. Ice packs and strong aspirin with caffeine and muscle relaxant worked on my head to bring down big headaches and nortriptyline 100mg at night masked enough of the bad stomach pain or it would calm back down. Eating and filling stomach and sleeping on my stomach the pressure help the gut pain too.
That all lasted until spring 2018, up till then I had a job I worked hard at, traveled and had two kids. Lived life enough just with pain problems. I had so many tests done over those 20 or so years but nothing was really found. Just thoughts on what it might be. So those items I took or did was my Pump. Spring 2018 my gut started hurting more and seemed nortriptyline stopped working. It kept getting slowly worse till fall of that year averaged a 5-6. I had a ct and upper scop, labs and new pills tried in first year with this. I have been working on this solidly since January 2019. The pain added the pelvic area by also going now below the navel. I have had at least 7 different or types of Ct scans and been in hospital 3 times in last year for pain. I have had tests or appts every week for last two years. Those visits resolved nothing. The pain took over my life fully around July of last year when I could no longer distract myself. I have had probably over a hundred doctor visits and so many tests and all pills tried. I have had 8 different injections too. I won’t go on more on this but to say I have had no life worth living for little over a year now. I really need to quit my job which I work from home but is too stressful. My hold up is I know going on my wife’s employer insurance will block more medical things and cost around $5000 more per year. I have tried to not have to do it but I am suffering even more by working. Like you I can tolerate a high level of pain like an 8, I call a 9 so bad you are a ball in bed shaking your leg back and forth due to the pain. I have bad pain to the touch even from xiphoid to pelvis down the middle of my abdomen. Only twice in two years did the pain go down but couldn’t repeat it. One an injection that lasted about 40 hours and one taking a pill never tried buy only lasted about the same then vomited. I am in pain every minute of every day accept for when I tire out at night around midnight, I can sleep for 6-7 hours a night then I awake and it comes on in under a minute. I started losing weight a year ago because I guess the pain is so bad it took my appetite away. I lost weight every month but got worse after getting out of the hospital in Feb of this year. This year has been scary because I lost it fully and was really only taking in around 1000 calories per day. I was around 30 lbs too heavy but it was hidden well. I was down 44 pounds a month ago, then had my gallbladder out from a decent opinion from a surgeon. I knew though it wasn’t going to solve it but had to try something. I was so bad in late May I went to the ER again at the hospital the surgeon is based out of. Stayed one night because we decided on surgery but all the other doctors were stumped. I have basically run out of options in St Louis

I actually have had a few virtual appts with Mayo Rochester GI dept. The female fellow I mainly worked with was very caring and had a few more test ideas but they didn’t turn anything up. She actually just left Mayo as her fellowship was over. Not sure other than going up there to see them more they can do. I am not healthy enough now to travel. Plus I have two kids ages 15 and 18. I am 52 and been married for 26 years. The only reason I am probably alive today is my spouse is so caring and I don’t want to die on my kids.

Im not sure if I can try anything else. It’s exhausting to constantly be searching for answers. I am typing this right now at a level 8.5 and cant ever fall back asleep, last night was up to 1:30. I know exactly how you feel about living with pain. I waited for a long time on some doctor appts and they gave me no time or hope, terrible bedside manner. If you have never had constant pain one cannot understand. You might have said what I have said so many times in the last year. I can’t Live with this pain but don’t want to die. This isn’t living its existing. I even have pushed most all people away who care because I was tired of updating and answering texts of Any Better or What did doctor say. They mean well but I’m tired of talking about it. They all of course say How can they not figure this out. I can’t think of anything worse in life than constant pain. I don’t even have a real diagnosis which is hard mentally. I haven’t been the same person since 1/1/20, the mental anguish is so hard. It’s hard to not lose ones patience when the kids don’t do as I ask.

I won’t go on more than that but to say I think we are very similar. I didn’t catch if you are married or have kids. I am going to start again with a new psychologist and new PT. I don’t think I can talk it out to help or stretch it out etc. I just need some relief at times and can’t find it. For now I keep trying for my kids. They know now how really bad I am say since beginning of year that I might not make it and what they can do to help me. It’s hard though because they are teenagers.

I figure no pills work for you and it’s so Hard to be at this level of pain. I don’t know if you have a few people to lean on but it does try to keep you pushing along. If you get a new pump from someone do you think it could help again. I wish I had a story to tel you about pushing through but each day is such a challenge. It can take me 2 hours in morning or more to get out of bed. The depression is as hard as the pain. I’m not depressed like someone with a terrible mental illness but due to the pain taking over my life. I will add I had a similar troubling background of a mother who got sick from the worse MS you can get in the early 80’s and a step father who didn’t k or how to deal with it. It still haunts me.

This turned into a long read but I really understand about both kinds of pain we share. If a pump can provide hope you got to find one somewhere in an area maybe someone can drive you to. I can’t see me getting on a plane ever again with level of pain. I hope this helps you a bit to understand someone and of course many know how you feel. I have said many times Gosh give me stage 2 or worse cancer, something I know I have and a chance to fight it. I don’t have the answers to make you feel better but just know I am with you. I try to occasionally do some house chores or go outside some. I at times feel staying in the house feels even more trapped. For now we keep fighting because we are not given a choice. Reading stories on this forum tells you how many people have bad pain. Most of the time it helps reading these because stuff is said that compares and knowing your not fighting alone.

Gosh I wish we could find some relief for both of us. Right now battling bad thoughts is so tough. I try to not think that way because it doesn’t help, you gotta try to push those aside as best as you can. Bear I know your pain and feel for your. I’m right there with you brother.

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Hello gentlemen, @rt061069 and @bear338, I'm Rachel. Welcome to you both. You have come to a great, informative, and encouraging space. I admire how honest each of you have been in sharing your posts. I feel your struggles and frustrations over chronic pain, and the unsolved mysteries of why and what. I was on a similar journey of helplessness, depression and self doubt, until I discovered Central Sensitization Syndrome (CSS) through my own internet researching. It was a light bulb moment and opened me up to trudging forward because I knew I had tried everything else. I was spinning my wheels and making no strides. I knew I mattered, I knew I deserved better. I believe you do too.

I'm not sure if either of you have watched the attached video presentation by Dr. Sletten from Mayo Clinic's Pain Rehabilitation Center (PRC) in which he explains CSS. If not, would you be interested in giving it a chance? What questions may I answer about my own PRC experience to help you?

Rachel

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@rwinney

Rachel,

I read some of your chains and how last year Mayo pushed you back to Sept. I figure you have gone but not sure when to the PRC. Can you review your pain issues and symptoms. How long and did they get progressively worse. Tell me about the PRC experience, what do they do with you for 3 weeks in a row. I watched the video with the Doctor explaining CSS. I had never heard of that diagnosis but sounds like there are no pills or procedures to fix it. It sounded like you were still pursuing the medical/procedurally side still too.

Only people who have lived with chronic/persistent pain can understand what the pain does to you over time. The main problem I have is I never get any relief. Its really ranges from say a 7.5 (rarely) to a 9. I call a 10 you need an ER and in medical trouble. I have been in the hospital 3 times. One last summer for two nights and I only got out of it was another injection that didn't work. That too is our biggest hospital in St Louis and is tied in with Washington University St Louis. Its a top 20 hospital in many categories but they didn't put much effort in. I went end of Jan this year due to so much pain to a different hospital but same network with Wash U. They did a bunch more tests and only could find minor ulcers. The follow up I waited 8 weeks for was a joke, the top GI doctor in the whole chain blew me off. His fellow came in and took notes then left and then they both came in and he just said "I see you have taken a lot of meds but didn't stay on anything long enough. And go do biofeedback and read Brain/Gut book and left. Didn't even examine me. These visits just crush you mentally. I went to my GI doctors hospital in early June due to I couldn't take the pain anymore, that is when we decided with the surgeon to take my gallbladder out. I wasn't eating but on avg 1200 calories a day from Feb-May and lost a bunch more weight. It got scary how bad it was with not eating, I was in too much pain and had no appetite. I have had a big appetite my whole life and food actually use to help my minor stomach issues I had for so many years. I was only in the hospital then overnight as they didn't have anymore ideas.

Did you find relief going to the PRC, you put a lot of hope into it from my readings. Is your pain constant except for sleeping like mine? Do do you have drugs, PT, food, supplements etc that can bring the pain down a few notches for a break? I don't mind reading something at all very long, as we all have-I have put gosh knows how many hours into research for the last 3 years.

I really don't know how I am going to live with this. I haven't been able to distract myself from the pain for over 6 months. Its just hurts too much All of the time. I am stumped why a celiac plexus block didn't work for my abdominal pain, its worse today than it was leaving the hospital for the third time Feb 1st. I don't think I can handle at all going down another notch from here, it just is killing me and the pain runs such a long way since its lower pelvis to xiphoid. I think is a nerve disorder at this point with so much testing done. My mother died due to chronic progressive MS for 20 years. As i mentioned in other posts, in the last 2 years I have only had 3 relief days-one cannot live this way. Yes my mental health has suffered so much which doesn't help. The help came from one injection in the ilioinguinal and hypogastric nerves (48 hrs of great relief), Tramadol dropped it to a 7 one afternoon and then the buprenorphine dropped it 36 hours to a 5 though by late day two was vomiting. Mornings are so hard for me and I keep adding issue or symptoms such as occasionally a delay on urinating even though I need to go sometimes you have to push to start. The foot rubbing back and forth on the floor and how when I sleep it must turn off as it doesn't wake me in the middle of the night but once you do get up after 6-7 hrs sleep your toast. This morning I went to the bathroom at 330am and made it back to sleep but then 4 hrs later I have to go again and this time right after going to pee when getting back in bed the whole body pain turned on like usual to this time a level 9. So walking the short 20ft to bathroom it hadnt turned on but 1 minute later after going Bam. Its so frustrating, if I could occasionally get some relief there would be some hope, I have lived with headaches and the mild gut ache for 23 & 20 yrs each and adapted. This is something totally different and I don't know how I am going to survive this. I will be honest with you and anyone who reads this that if not for being married and having two kids I don't think I would be here today, I would have lost my will a long time ago. I am bringing of course stress into the home but also am dealing with teenager issues, my wife handles most of it but when your world gets so small like mine has (I was very outgoing and the leader of fun) you start nitpicking your family and looking for something to say that they are doing wrong. To a degree I have always been somewhat of a perfectionist but not this bad.

I'm sure I have more to add but for now leave it at that. I started with a new PT person, gave it a try some last year and someone to talk to. My daughter who is almost 16 has her own anxiety going and is seeing a therapist. I am suppose to go with them tonight but not sure I can do it and be honest. I am interested in you filling in the blanks so I can understand your pain and where it is now.

Thank you for caring,
Rob from St Louis

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Dr. Sletten's presentation was very informative. However in conclusion, he more or less admitted that there is no real solution for eliminating chronic pain. Wish more research for solutions for treating and eliminating chronic pain be conducted.

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