Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Do you ever feel alone in your own home?

Dec 27, 2014 10:24 PM

My name is Dan. About 12 years ago, I fell off a ladder about 20 feet. It took my foot off and damaged my back. It took eight surgeries over three years to get my foot to stay together. We had to travel to many different hospitals and try different things. At times, I asked them just to take it off. Since then I, I have been disabled. That same day, I hurt my back very badly. The doctors didn't think so because they didn't see anything. But I asked them to explain how come I could no longer sit down. I could only lay down on my side. Since then, it has been one thing after another. I now have several health problems. I take thirteen to fifteen different pills. My bones are disintegrating. I started off with arthritis at the break site. Now I have severe arthritis in seven different spots. The worse being the back and the shoulder. I am 45 years old and I no longer have any cartilage in the socket of my shoulder and they want to do a shoulder replacement surgery very soon. I use to rate my pain a six out of ten on my worse days before. But now I am dealing with an eight and I have always had a high pain tollerance. Do any of you have specific areas you should have pain but several times a week are overcome with total body pain that feels like it is eatin you alive. The only thing I can do is put a very warm blanket on. I don't tell my family. I don't want to die but I wish I didn't have to,live anymore like this. I feel I have been strong long enough. I feel like I am taking the blows for a group of people. I know that is not the case. It just feels like more pain than one person can take. I guess I should be happy someone else doesn't have to experience it.

As much pain as I am in, I don't think I was ever really severely depressed. But I have found myself that way lately. My family has put up with my illnesses for a long time and they have been very supportive until now. I understand it comes to a point that they have had enough. I wish they knew that point came a long time ago for me. Things go wrong for me a lot. I have to go to the emergency room, be put in the hospital. Things happen at home that are scary, rashes break out and do on. My family would listen to my concerns as I would try to figure out what is going on. But now my wife has requested that I no longer tell her about the things that are or I think is happening to me. She states that there is nothing that she can do about it. She suffered with severe depression for many, many years. It was once pointed out to me that we as husbands can not fix the problem, but we can listen. So I listened, and listened endlessly. I showed empathy for her. I hated to see here unhappy. I know she can't fix my problems but with all my problems, I have developed an anxiety disorder. It would be nice if she would just listen. I guess I am mad that she doesn't want to return the favor. I went off a medicine. It is causing me to involuntarily hum and rock back and forth at times. These are very embarrassing to me. I don't do it if I am in an active conversation but it happens through the night and I am driving my family crazy. They are very mad t me at times and rant at me. They will tell me that I need to stop it I'd do it lower. My daughter told me she thinks I have control over it. I asked her if she really thought I would deliberately make her unhappy.? What this gets down to and I am sorry it took so long to tell my story. But all of this just makes me feel alone. We are alone already because they don't know or understand or comprehend what we are going through. And we are happy about that. They may reason they hurt for a week so they understand. But that pain was quickly forgotten. Most of us live with pain. We wake up with it and try to pull it with ourselves out of bed. We carry it where ever we go and usually have to rest so we can find the strength to pick it up again. I hope nobody feels the way I do but a part of me is sad to think a lot of you just may.

Dec 28, 2014 8:52 AM

Oh Dan, I am so very sorry you're feeling this way and have to go through your suffering alone. My hubby and I both have chronic pain issues, both to accidents. Mine more recent than his. For many years I was like your family. I just couldn't comprehend this level of all consuming pain. My hubby worked construction and looked physically fit. And society still looks at men as the strong ones in relationships (generally). So for years, the poor man had to work a backbreaking job despite massive pain which led to him drinking excessively. Not fun for anyone involved! When we were able to afford it financially, he stopped working and I'm now the sole breadwinner. Except for now I'm in pain all the time and what's worse- get foggy brained. And since I use my brain to make a living, that's a problem. I'm switching to a job that's less demanding in January and we'll go from there. Being able to get iut of the house and interact with others is important for me because it puts my problems into perspective. Seems like everyone has a cross to bear. They're just different crosses. My hubby stays home and takes care of our dogs. He has become an avid video gamer and has quite the online community to interact with. And about once a month, he meets with old friends. Long story short - if you can find something that you enjoy doing that takea your mind off your pain and gives you and your family a break from time to time, my suggestion is to give it a try. And if that ain't it, try something different. Keep us posted!

Dec 28, 2014 10:16 AM

Hi Dan, I'm sorry for what you're going through. But know this, you are not alone. You will find many supporters in this community, who like you have chronic pain & health issues.

I'm 53 and in my lifetime I've had 18 surgeries, 16 of necessity. When I say of necessity, I mean they weren't choices but things that happened to my body which surgery was a must. The 2 that were choices were a tubaligation and a partial hysterectomy, at the suggestion of my doctor. If I could reverse time I'd never have had either done because I, my husband, and several doctors believe they contributed to many problems 2 decades later, of which I am suffering now.

I was working full time in 2010 even though I'd been complaining to my doctors for 2 years of all over pain, most severe in the abdomen, low back, pelvis & legs. Long story short, I've not been able to return to work as my health continues to deteriorate. I now have dementia & motor skill loss to add to a long list of other diagnosed issues. One is a genetic defect, which I only recently found out I have, and hope & pray wasn't passed on. Two of the biggest causes of pain are fibromyalgia and osteoarthritis.

Like you I had the same feelings of wanting to die but not suicidal. And like iathompson said, finding something, anything, to take your mind off of your pain is important. For several years my family doubted what I was saying was real. Many of my husbands friends & coworkers would ask how he could stand by me, when I obviously needed psychiatric help more than anything (their opinions). But I asked my husband to start going to my doctor appointments with me, so he could hear what they said. That was a wake up call for him, and others, when he started explaining what he had been told by my doctors. He began to be my biggest supporter & defender, other than my faith in God.

Unfortunately for me I can't stand, sit, ride or walk too long at a time. I must rotate my positions throughout the day for comfort, and break errands up into short periods. Even my arthritic hands & spine prevent me from cross-stitching or sewing anymore, or writing/typing/food prep & cooking over 30 minutes at a time. But I do enjoy reading still, and I spend a lot of time reading my Bible. Being raised in Christian home I am very committed to spending time in prayer & reading. Sometimes I just talk or cry, knowing God is the only one listening. But that's my focus, that's what gets me through.

Last let me share something I prayed just this year... "Lord, I will accept whatever health issues you send me, especially if it means the genetic defect stops with me. And my children, grandchildren, nor great grandchildren ever have to suffer the afflictions I am. I don't ask for a miracle healing in myself, because I am no more worthy of a fully healthy body than a child born with afflictions & defects. I only ask that my family would never go through as many things as I am."

I can't say none of my family will never suffer, but I believe with all my heart they'll never be as addicted as I am. And so saying that, it's all worth my suffering to me, because my faith is strong that God will protect them.

I will say a prayer for you, that someone will listen and become your advocate & supporter, hopefully your wife. And may you find answers to the cause of your problems, because not knowing why is over half the battle, mind, body, & soul! May God bless you 🌸

Dec 28, 2014 10:53 AM

Wow, Dan.. I'm so sorry that you are going through this. Your words could have come out of my mouth. I know exactly how you feel. I've had 26 procedures in the last 18 years. I started with pain in my shoulder and it snowballed from there. My bones are disintegrating as well and I have no recognizable shoulder joint on the left side. The right is now following suit. I too take a butt load of meds and my pain lately has been 8 out of 10 ON 100mg of morphine. It gets tiresome to bear that constant pain. I know my family feels bad, but don't know what to do with me. I hole up in my room often and feel useless and very lonely. I don't get me wrong, i. Proactive in my care, research new treatments and speak to my doctors about alternative treatment. I pray you find peace... I'm here if you need to chat.

Dec 28, 2014 4:08 PM

Hey allwaysinpain. Mine started with my shoulder.
Oh Dan! I do feel your pain......quite literally! I have just done a4 hour journey to see the rest of the family over Christmas, well that was the plan, but by Boxing Day morning I was way pass agony, so my husband decided we had better call it a day and make the journey home. I've been in bed ever since, in agony! the family say, oh I know how your feeling I ache today, I just keep quite, what's the point, no one could describe this level of pain! I'm still in bed, only getting up for the loo and a wriggle trying to relax my muscles.
Hang on in there Dan, as I used to say ' it's always darkest befor the dawn! Just didn't realise it was going to be such a ******** night!!

Dec 29, 2014 6:18 AM

Thank you all so much for your kind words. I appreciate them so much. It was nice to find others who understand how I feel but at the same time, I am sad that you have to understand. But it is nice to not be alone. Sometimes you just think you have hit your limit. I thought I had the other day. I thought my family despised having me around. If they only knew that the reason I make sure I stay around is to support them. I was fortunate that when I became injured and disabled, my employer had taken out a disability insurance policy. So I am able to get to collect my social security and disability insurance. I stay around because I'm the only income they got and I do love them very much. I just don't like being their eyesore.

But on a positive note, I read an interesting article last night. I have been desperate to find in alternative to NSAIDS. I think they have been weakening my kidneys the past few days. I have been taking 800 mg every 8 hours. It is taking a toll on them. It has before. So you may seen this before but I was reading last night that omega 3 is a good anti-inflammatory. I already was taking one but they said that a dose from 1200 to 2400 mg is helpful for inflammation. It was a good source. I read it online at the National Institute of Health. So I am trying that today and hopefully I will get some relief soon. People always ask me if I feel better. I use to say yes all the time. I think they thought I would come to their house or see them at church, or go to a picnic. So now I tell them I feel happy if my pain goes from a sevento a 3 or 4. That is what makes me happy these days.

Again thank you for your kind words. I normally don't leave the house but once or twice a month. On top of the pain. I have gained much weight when I was in bed for a few years. My medicine has ruined my teeth. I really don't want to be seen. But I will try to get out and have someone in my family take me for a drive. But, I just usually stay near my laptop or have my iPad on me at all times. I usually see someone every couple of months. But that part doesn't bother me. Since I am usually trying to deal with my pain.

Have a good day you all. I hope this day brings whatever relief is possible to all of you.

Dec 29, 2014 7:00 AM

Profiler, I don't get out of the house as much as I use to. My husband and I took a trip every year, for the 7 years I was working, to see places in the USA. We enjoyed seeing new places, and talked about places we'd like to see. One of the most memorable trips was a genealogy research trip of my grandfathers family. Unfortunately I am unable to make long car trips now.

But I still love to see places, so I am on Pinterest. It's a way to escape my walls at home and experience other's trip photos. Many are overseas places I'd never see, because of my fear of flying.

I'm going to try the omega 3, thanks for sharing. Enjoy your day, and may it be less painful than yesterday.

Dec 29, 2014 9:41 AM

Dan,
I only leave the house oce or twice a month myself. I used to be on the go constantly and now go nowhere. I get anxious to the point of illness if I have to make an appointment or make advanced plans. I worry that I will not be functional and miserable and therefore ruin everyone else's time. I booked a flight to visit cousins and it was six months away and I was a basket case. Even when I have a doctor appointment, I get anxious because I can't sit in a waiting room that long. My doctor is talking about cutting my meds because I'm on high doses but every time they cut down, my pain levels go up. I was overweight all my life but really packed on weight when I couldn't work any more. I lost ALL my teeth and got full dentures at the age of 40. I'm now 49. I don't want people to see me either, I know what that feels like. I know folks that have pain but are able to push through and it makes me feel very weak. I've been in agony 24/7/365 for the last 20 years and sometimes I, too, feel like I've reached my absolute limit. I have a lot of spinal pain that radiates through to my chest and upper abdomen making me more uncomfortable. The confirmed conditions I've been diagnosed with sometimes just amaze me sice my pain began in my left shoulder. I have CRPS, Fibromyalgia, scoliosis, degenerative joint/disc disease, long thoracic nerve palsy, RSD (reflex sympathetic dystrophy), spinal Spondylosis, migraines, Graves' disease, anxiety/depression (gee, wonder why), and now they want to test me for Lupus. I have many of the symptoms and since it can effect your organs they want to either confirm or rule it out. I'm sure I've left something out but who's counting. I know there are many who suffer more than I do and don't feel like I have a right to whine so when folks ask me, I say I'm just fine. If you need to chat, I'm here every day at some time or another. Anyone who needs, I've got two ears to listen and two shoulders to cry on... Hang in there, Dan, we're all in this together.

Dec 29, 2014 8:05 PM

I've gained 50 pounds since July due to the drug cocktail I'm on. But that's one of the upsides of living in the Florida Panhandles. Lots of fat people with bad or no teeth. And they do go shopping in their pjs. The first time I went to the grocery store in my slippers I thought everyone was going to stare. Nobody even looked. Not having to worry about what people think makes life a heck of a lot more easy on a heavy pain day. Come on down y'all!!!

Ready to start relieving your pain?

Join Community