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Posted 3/1/2012 11:59 AM (GMT 0)
Tired of having to say 'I hurt'.


Hey everyone, hope you're ready for March. (I just am desperately awaiting warmer weather.)

I've recently been sort of worse than usual in terms of pain level, and its been over a year since this all started. I'm still on the same pain medication—Tramadol--which doesn't really help me much at all, but I have nothing else to lean on right now. It's one thing to hurt every day...but I just can't live with this level of pain any more...it's just too much.

I see my pain management doctor on Monday, so I am hoping to tell him about this and emphasize how much I really need help with this. I feel like he hasn't really understood how debilitating this has been and how much it's changed and impacted my life. But I hope to get some help.

Other than that...I've been dealing with worsening depression lately. I'm just tired of being at home all day with nothing to do, unable to do much of what I want to do, and sometimes just not feeling up to it due to the depression itself. My day basically consists of playing video games, using the computer, sometimes watching tv, and sitting/lying around. I really only get out for doctor appointments.

My boyfriend does get out more with people and asks me to come, but most of the time I just can't—I just hurt too much to walk around a mall or town and be out for hours hanging out with people. I want to be able to do stuff and have a social life, or just have fun outside my home...but it just seems like I am so stuck here. Every time someone asks me to go out or whatever, I usually have to say 'I'm really hurting today', or something to that effect. The problem is that I'm ALWAYS hurting.

I guess I'm just sick of being 'sick' as it were. Sick of having to say 'Sorry, I hurt'.
Posted 3/1/2012 1:18 PM (GMT 0)
Hi Misterkatamari

I`m so sorry to hear you`re having an awful time with pain and depression.

I can relate to being on a dose of medication that was not effective and doctors not fully understanding the impact it has on your life. Eventually I found a doctor who took me seriously and understood I needed something stronger than tramadol (for me it didn`t help either). You will too eventually find someone, it`s just awful it takes so long. Please mention the depression as well as pain and depression are very common.

I also feel most of my day is spent in bed if I`m not at work and I do turn down offers to go out because I`m sick. It`s very hard to deal with. But hang in there.

Could you get your boyfriend to go to the appointment with you for support? I don`t know if I`m right but I think it could help if you have someone to back you up who can also mention how bad the pain is for you and how he sees you suffering. Sometimes doctors put words in our mouths and it is very hard to get your point across. Just be assertive that you are in agony and can`t go on like this (just don`t mention specific drugs).

Let us know how you get on. I`m thinking of you. Take care, Di xxx
Posted 3/1/2012 1:18 PM (GMT 0)
Hi Misterkatamari

I`m so sorry to hear you`re having an awful time with pain and depression.

I can relate to being on a dose of medication that was not effective and doctors not fully understanding the impact it has on your life. Eventually I found a doctor who took me seriously and understood I needed something stronger than tramadol (for me it didn`t help either). You will too eventually find someone, it`s just awful it takes so long. Please mention the depression as well as pain and depression are very common.

I also feel most of my day is spent in bed if I`m not at work and I do turn down offers to go out because I`m sick. It`s very hard to deal with. But hang in there.

Could you get your boyfriend to go to the appointment with you for support? I don`t know if I`m right but I think it could help if you have someone to back you up who can also mention how bad the pain is for you and how he sees you suffering. Sometimes doctors put words in our mouths and it is very hard to get your point across. Just be assertive that you are in agony and can`t go on like this (just don`t mention specific drugs).

Let us know how you get on. I`m thinking of you. Take care, Di xxx
Posted 3/1/2012 3:31 PM (GMT 0)
Thanks so much, Di.

My doctor is nice, I just don't think anyone truly gets the level of pain I have and the fact that it is seriously constant. I think it is mostly due to my age, being in my early 20s. They're also concerned of higher narcotics because I will likely have this chronic pain for the rest of my life, so they dont want me to get too tolerant of narcotics. You can build a tolderance to Tramadol anyhow, though, so I don't know.

I'll post when I find out more on my appointment on Monday. Here's hoping I get some results. :)
Posted 3/1/2012 3:59 PM (GMT 0)
I'm sorry to hear that you're going through all this at your age. I'm in my early twenties as well, and although I've gotten accustomed to always staying in while everyone else goes out, it still blows. I don't know how sympathetic your doctor is in understanding your situation, but maybe telling him exactly what you said here will help. At your age you should have to be dealing with this, so voicing your concerns on both a physical and emotional level may get you somewhere. It took me a couple of years before my doctors understood, which was great, but I recently moved halfway across the country so I have to start this whole process over again.

Something you might also want to bring up to your doctor is possibly switching to the extended release form of tramadol, and getting on something stronger for breakthrough pain. Tramadol is both a mild opiod and a SNRI, so in long-term treatment it acts as an antidepressant that really helps with the physical pain associated with depression.
Posted 3/1/2012 5:12 PM (GMT 0)
Aw Mister, i know you have been suffering for what seems like forever, things really have not been good for you. We already know how your dr reacts because you are young and that does not help. Do me a favor, the next time he says you are just too young to be in this shape, agree with him but tell him, you know dr pain does not discriminate with age and give him something to think about. It does not matter if a person is 18 or 100, pain is pain no matter what. Let him know the Tramadol for the past year has done very little for the pain and you need for him to try you on something different. Be direct and firm.

You are not going to like what you read next, but I am going to put it out there. You are stuck in a rut because you hurt. And when its like this its so easy to say I feel too bad to do anything or go anywhere. You are using your pain to avoid having go out. Isolating yourself is no good. I have done this, matter of fact I did it a lot until my dr told me to stop and why I needed to stop. Even if you go and only last an hour thats ok, make the effort. For some reason when we are in pain like this we really do pick up some bad habits. Its just as important that you get out a little as it is to take a pain pill. I had a very hard time at first forcing myself to go and get out socially for even just a bit. And sometimes I was lucky enough it took my mind off of the pain a little. Please, do not get me wrong, I am not for a minute downplaying your pain, I know what you have been through the past year just from the posts you have written here.

I am in Tx and we really did not have a winter this year. I happen to take a good look at one of my flower beds and I have flowers blooming and the beds are a wreck, complete with needing not just weeds pulled but new mulch put down.I went out early this morning and spent about 45 minutes before I had o stop. Normally I could do this bed in 2 hours, this now takes almost a week for the same job. When I am finished I will be proud of myself.

Hang in there and let us know how the appt goes....Susie
Posted 3/1/2012 7:35 PM (GMT 0)
I can't type too much right now because, well, I hurt pretty bad right now too. But I had to get on and contribute here. It really hit a nerve with me. I'm 33, so a bit older than you, but still in that 'too young to act like this/ feel like that' stage.

I also struggle with feeling like I need to stay in because of how much pain I am in. My situation is a little difficult because my pain level changes depending on my inflammation levels, I am always in some level of pain, but some days are better than others, and there is no way to predict what it is going to do. So not only am I in pain, but I have no control of my body which randomly decides to torture me.

I have though, started to go out with some family and friends. At first I would have to drop out early in the evening, just unable to keep up, but eventually they started planning things that I could easily do with them. I also enjoy doing things where, if I cant participate, I can at least hang out too. Like being there when we all go bowling, but I don't play a game. I don't stay the whole night because the noise eventually gets to my head, but I had a good time and was out with friends.

If they aren't used to you being there they don't know to plan activities that you can easily keep up with.

Also your whole life will change when you get better medicated. There was a 3 month period that we got ahead of the pain, and I almost felt normal, like almost pre- pain normal. Then my condition deteriorated again, but I remember and I know what it can be.

One trick I use, because I do find it difficult to speak up in the drive office, is print out where I have described my situation well, like you did at the beginning of this thread, and highlight the best parts. Blow it up to a big font, and only give him your own words. Just hand it over, with "this says it best". It has worked well for me.
Good luck, I'm praying for you.
Posted 3/1/2012 10:21 PM (GMT 0)

straydog said...

You are not going to like what you read next, but I am going to put it out there. You are stuck in a rut because you hurt. And when its like this its so easy to say I feel too bad to do anything or go anywhere.

Yes, you're right. Plus, I have depression and social anxiety so I naturally shy away from social situations, meaning that my physical problems have worsened my mental ones and encourage my antisocial behaviors.

I still do some things, and I do still shop when I need to, its more like I feel like I can't do the things I actually want to do rather than things I 'have' to do. It's also annoying that I can't really drive either. But yeah, when you get in a rut you can dig it deeper over time for sure. Also, what you said about weeding and stuff makes sense and you should be proud of what you can do no matter how it compares to before. That's a good perspective, so I should maybe think of the small things I can do every day instead of just 'well I can't go to the mall today'.

So thanks Susie, and thanks everyone else too. :)

I'm feeling a little less depressed now, and I saw my therapist today too. She's really nice and I feel like she understands me well, so it helps to vent to her too. Thankfully I have her and you guys to talk to--well in addition to my family, though I try giving them breaks. lol!
Posted 3/1/2012 11:25 PM (GMT 0)
Mister, I'm sorry you're hurting so badly. I'm 27 so similar age to you.

What Susie said - it's right - and I'm guilty of the same thing. It hurts me to be in a car and hurts me to sit. Your description of your day could be many of my days. I enjoy crafts, and I try to do some craft each day - even if it's only five or ten minutes. Just to say, hey, I've done something.

I'm glad that you've got a good therapist, and family you can talk to.

Good luck, and hang in there.

Laura
Posted 3/2/2012 12:11 AM (GMT 0)
We can all empathize.....it's a catch 22 that every one of us has had to face in our pain journey...

We start spiraling downwards when our lives are changed so dramatically...I think it's even harder at times with social media and seeing our friends and family out living their lives and posting on FB. And our excitement for the evening was watching that tv show or getting the mail!

I went through a particularly rough time after my divorce as we had such a close knit group of all our friends with me and the wives and my ex husband with the husbands. So I backed off to let him attend certain events like football games or bbqs...Along with this happening at the time of my 3rd surgery...I started saying "no thank you" more often than I was saying yes...

It's that really difficult phase we all face when our brains are the same...That first moment I wake up in the morning I think, "I can do everything...I'm just the way I used to be...I have such hope for the day"...And then reality slaps you upside the head! Our bodies rebel and mock us saying, "oh no you can't!"....

So...in saying all of this...I absolutely agree with Straydog that we HAVE to fight this urge to say no all the time...That even though we can't do everything we used to....doesn't mean we should stop doing everything...

I find that those moments when I am laughing so hard I have tears streaming down when I am enjoying lunch with my friends...I've learned that I would much rather pay the price for higher pain the next day or two and go ahead and say yes to some of the things that I love. I can't ride a motorcycle every weekend....but I certainly can once or twice a month...It's absolutely worth every bit of pain.

The key is trying to make the downside as little as possible...Maybe try to get a ride from someone to go visit your friends or an outing and then that way you can take that muscle relaxer or pain pill and not worry about driving...Or tell someone that you can come for an hour but can't stay the whole time...

I've become close enough with my PM Dr. that he knows that I still need to live my life...that I just HAVE to find things that make me laugh, make me feel alive...I just ask him.."will this actually harm me in any way or just cause more pain"..If it's the latter....than I go for it!

The other thing I've done is make sure that I also plan time to do things for others...I have organizations that I volunteer for, as well as maybe stop by and bring flowers to a friend who is sick, or go feed someone's dog during lunch..etc. By planning things like this as well....it helps me get out of thinking "woe unto me" all the time...

I've learned that I have to laugh at least ONCE each day...and even if that is just from a favorite tv show...or tomorrow visiting friends...it's some of the best medicine out there!
Just like taking my dog for a walk each day for 30-45 minutes...It gets me out of the house and good exercise but it also makes my pup incredibly happy which makes me feel good as well!

Sorry for rambling...but just know that we all are here for you..and glad you got to see your therapist and had a nice uplifting talk...

Sending you hugs (( ))
Posted 3/2/2012 3:18 AM (GMT 0)
Patrick- I'm sorry you are having such a hard time right now. I am right there with you. I can understand why your Dr's would shy away from narcotic's with your young age, but they need to understand that your age does not matter, if you are in pain you need something that will help. I'm surprised you've lasted this long with the pain being on just Tramadol for a year- it's never done a single thing for me, it's just like taking a tylenol, absolutely useless. Our bodies get used to every medication we are on, narcotics or not, and those medicines have to be adjusted periodically. For instance- I was on Percocet 5mg on and off for probably 5-6 years, then I went to the 7.5's and within about 6 months had to be put on the 10's. I've been on the ten's for a few months now and my dosage already needs to be changed. My Dr has me only taking two a day, which just isn't cutting it. Since I am only 34 he doesn't want to increase my dosage or put me on something different, so my last visit he changed the dosage of my muscle relaxer- that didn't do a thing. I had an invasive diagnostic test two days ago to see if my SI joints were ruptured, and they were not, and I see my Dr again on the 9th and I'm going to have to be firm with him because this pain is just too much for me to handle. I am where you are- only leaving the house if I have to. I dread just having to go grocery shopping or to the pharmacy, and I put it off until I no longer can. But, I agree with what everyone else has said- you need to try to get out of the house. I had a birthday on Feb 17th and had plans with a good friend who wanted to take me out to lunch and then do some browsing/shopping. I woke up the day of my birthday feeling horrible, but I could not bear to break my plans due to the pain since it was my birthday...I had about a 45 minute drive, which driving kills me too, but once I saw her I immediately focused on just having fun...We even went to a tattoo parlor after lunch and I had one of my tattoos touched up- My pain was not as bad as usual because I was out having fun...did I pay for it the next day? Yes, of course, but I didn't care because the prior day was fantastic. I have been trying to get out of my house more because if I don't I am a complete and utter mess pain wise and mentally. Even if it means I spend more time perusing the grocery store, and even if it means I am hurting bad, I am out of the house and it lifts my spirits. OK, I realized I have rambled on, sorry about that. My point is, try to get out when you can, don't over do it, just try small amounts of time at first. Also, you have to get on something else besides the tramadol, or at least have the dosage increased. I wish you the best of luck with your Dr's appt and please keep us updated!
Posted 3/2/2012 4:35 AM (GMT 0)
So very sorry your having a hard time, maybe ask about a medication switch...
You probably have gotten to that stage on your tramdol where it's not affective
anymore so a switch might be in order, with chronic pain we can get tolerant of these medicines, so
every so often think about asking for changing out your medications...sure hope your appointment goes good for you....
Many many well wishes...
Posted 3/2/2012 6:20 PM (GMT 0)
Mister, I have to ask,lol, do you also go by Erin or Eric, I cannot remember. Yes, I love being outside in the sunshine, it charges my batteries, lol. I went from doing all of my own yard work to doing none for 7 stinking years. It was my therapy in my other life. I worked in a high stress job and that was how I worked out my stress was yard work. I had a beautiful yard, not bragging either, lol. People stopped and neighbors always asking what I used on my flowers & yard it was hard work that paid off, lol.

I can sometimes mow if someone starts the mower for me. I don't have the strength to pull it to start. Husband went out and bought a mower that has a key ignition and you just turned the key and it started but I did not like it at all made him return it, lol. It takes me a long time to work in the yard but thats ok, at least I am doing it the way I see it. I am going to try and find the guy that took care of my yard those 7 years, he was awesome and did the work to suit me. I cannot trim the bushes anymore because I cannot hold my arms up to hold the clippers.

Start doing small jobs is the way to start. Like you said, it may not be a mall day but there is a lot of things you can still do. I am not a mall person so even if I thought about handling the mall, I would probably pick something else. I have a lot of trouble being around crowds and a lot people and noise. I still get the panic attacks with that scene.

Hang in there and just don't give up, start out small and work up.
Posted 3/2/2012 6:39 PM (GMT 0)
Fireflyhillary....if I could ask a big favor as I love to read your posts but have trouble. If you could please break them up into small paragraphs....it would make it so much easier for all of us to read....

Just a friendly reminder to all those who post...many of us have trouble with either our sight or headaches, or reading large amounts of text on a computer....so by breaking our posts into many paragraphs...it really does make it so that more of us can enjoy what you and others have to say...

Thanks so much:)
Posted 3/2/2012 6:50 PM (GMT 0)
Hi Patrick

Just wanted to let you know I have also experienced the same argument from doctors that because I`m young I should not take painkillers. It is so frustrating, even if they are genuinely concerned. But don`t give up. I am 28 now. I started having pain when i was 23 and the doctors were adamant it would be too `dangerous`for me to take anything stronger than valium or tramadol. It took four years until I got referred to a pain specialist and when I did he took my pain seriously. He saw the scars on my legs from having to use a hot water bottle all the time and he was shocked and then I tried to casually ask for painkillers for just when the pain was at it`s worst and he said `of course`, I was trying to hide my surprise! It took a bit of trial and error with dosages but just knowing he took me seriously put my mind at ease and after that I didn`t mind having to go through more pain as I knew he would try everything until I found a solution. Now I`ve been on my current medication for over two years with no dose increases and things are a lot better. I don`t know if I`ll eventually need to increase the dosage but it has worked well for a long time and the doctors are happy that I don`t need to keep increasing it so I know that is in my favour. The medication is effective about 70% of the time, I still have breakthrough pain and days when the medication barely works and I always wake up in pain, but it really has made a difference being able to get relief some of the time. I think the depression will improve too once you are on a more effective medication, then you at least get a bit of a break from pain.

I agree with what everyone has said about trying to get out even if just for a bit, though I know it`s hard and I often just stay home. But I know on a day when I go out even just for a walk early in the day I feel better than if I stay home all day. Then if it is just for a walk once I get home it`s ok if I don`t achieve anything else and then I can try to look forward to watching TV etc rather than saying to myself I`ve been doing this all day, I`m so depressed.

I think that`s a great idea to write down your thoughts and show the doctor like Christina suggested. Even print this thread out, it shows you`ve taken the time to find a chronic pain forum because you are suffering so much. I wonder also if your therapist could give you a letter or talk to your doctor - I could well be wrong here but if you have an understanding therapist who knows how bad it is surely it can`t hurt for them to pass on to the doctor that this is having a severe impact on your life, with your permission of course and if they agree to it. Just a suggestion.

Anyway all the best for Monday. Stay strong and let us know how you go. Love Di xxx
Posted 3/2/2012 9:34 PM (GMT 0)
Snowbunny- Yes, I can do that....sorry about that.
Posted 3/2/2012 9:59 PM (GMT 0)
Ohh...please don't feel bad Fireflyhillary....

Thanks for helping out! I also change my settings in IE to 150% to make all the text bigger on all the web pages...
Posted 3/6/2012 3:34 AM (GMT 0)
Hello,

I having nothing of value to add, just to say I'm sorry for your pain and subsequent isolation. Just remember you are not alone. I am well over twice your age and I have lived a pretty active life up until almost two years ago when I had a work injury.

I lost my job, career and what I thought were my friends. In return I have limited mobility, chronic pain that's like a lava lamp...the pain goes up and down my spine, neck, head, arms, legs... I am home alone all day and I am terribly depressed as well. I don't shower and stay in my PJ's unless I need to go to a doctor's appt. I don't go to physical therapy anymore, because it doesn't really help. It feels good that day, but the next day I feel the same, as if I was hit by a truck! I don't think I will ever find the magic dose of meds that would erase my pain. Some days are better than most.

I try to remain positive...I walk with a cane, but I could be in a wheelchair. I am always reminding myself that there are others outside my little cellblock that have it much worse than me. I'm harder on myself than perhaps I should be, but it helps me to keep things in perspective. I'm sorry that in your twenties, thirties and yes even in my forties that we have to suffer like we do. If you or anyone wishes to extend our conversation I can always be reached by email. Just please put "healing well" in the subject heading.

I keep reminding my doctor (as a semi joke) that if I were a horse I would have been put out of my misery a long, long time ago! LOL. Hang in there...you are not alone! I gotta go, the warden (wife) is yelling at me again. Looks like solitary confinement (couch) for me tonight.

Charles
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