Chronic Pain About This Page:

[Eeyore Tattoo]

What do you do if you live with it?
Do you keep it to yourself?
Do you whine about it all the time?
Do people treat you differently?
Do you get to feeling sad & blue or angry with yourself?

[Happymommy]

I've pretty much kept it to myself, because I don't think anyone would understand. My pelvis separated in my 16th week of pregnancy (6 years ago) (pubis symphysis), and it stayed separated much longer than it should have, which caused lots of friction, and osteoarthritis. It's not something that's common, and it's even more rare that the problem doesn't resolve soon after childbirth--- so I don't think people would understand, and I really rarely talk about it. I honestly think since the pain is always there, I sometimes forget about it--- does that make sense at all??? My physical therapist and orthopedic surgeon understand, so I save the whining for them haha!!!!! It's a relief to me (in a sense) that my ortho surgeon can see all of the inflammation on the x-ray, so he knows what I deal with, without question. But then it's upsetting because he's never had a patient with inflammation that lasted this long (but his colleague has had a few patients with it) People don't treat me differently since they don't know--- my husband (love him to death) but I'm not sure if he even realizes I'm still in pain. Whenever he talks about my maybe training for the WDW marathon with him, I look at him like he has two heads, and he's like--- "that still hurts"??? I thought maybe I could do it once, and the pain got unbearable once I tried running. Do I get angry and blue--- honestly no, it was for a good cause LOL. I guess I'm lucky in that sense LOL. No reason to get angry at myself--- how could I have prevented it (except to not have had Danny--- and he's worth the pain). I was advised not to get pregnant again--- or I may have been wheelchair bound during the pregnancy due to the arthritis in that region--- with two boys that wasn't an option, so that sometimes makes me sad-- but I was lucky enough to have two beautiful boys. I do worry that it will get worse as I age--- that's actually a big worry, but I try not to think about it.

[wendybell]

I keep it to myself as much as possible. I have fibromyalgia and chronic fatigue so, i get "you don't LOOK sick" more than i care to count.

I don't get angry with myself but i do get "blue" when i'm going through a rough patch.

[Eeyore Tattoo]

I guess I should put in answers to my own questions too....

Do you keep it to yourself? On my bad days I tend to stay in bed & don't like to even talk on the phone. I know people can here the pain in my voice..
Do you whine about it all the time? I try not to because people don't understand chronic pain & seem to look at me like I am crazy.. "How can you hurt everyplace all the time?"
Do people treat you differently? Sometimes, Another reason I don't like to tell them about my Fibro..
Do you get to feeling sad & blue or angry with yourself? YES!

[stonewall]

Ugh, Deb, this question is one of my worst nightmares. I'd ignore it, but as a Guide, I feel like I have to contribute!
I have lived with RSD (Regional Sympathetic Dystrophy) since a knee surgery gone bad in March of 1999. The official "pain scale" rates it as above the pain of end-stage cancer, but I have no need to quantify it, thank you. Under the care of a Pain Center at a major teaching hospital, I rotate through narcotics at least once/yr, and I honestly think that's worse than the RSD itself! I've been incommunicado for a few weeks because their latest attempt at pain control has had me laid up with side-effects that are just plain nasty. This time it was from Morphine to Methadone, and although the latter is wonderfully effective on the actual RSD (and the pain of 5 ruptured vertebrae AND Fibro AND severe Rheumatoid Arthritis!) the side effects have pushed me to the end of my rope and when I attend my monthly appt. tomorrow, I am not going to leave there unless the medical personell take me off of this stuff and try something else!
Do I talk about it? No, what's the use,my family knows and chooses to ignore it most of the time (!) and friends know about it anyway, while strangers don't care at all! There are days when I just want to curl up in bed and hide under the covers, tonight being one of those times. People don't treat me differently, except for one person I let into my life, who insisted upon doing everything for me and treated me like porcelain- that person subsequently drove me nuts and is out of my circle of friends! I can't honestly say that I feel sad or angry with myself- definitely not angry, anyway. It does bother me that I can't wear shorter skirts any more(full leg brace) or my beloved sandals (resultant problems..); what really does bother me is that I have come across some really unfeeling medical people. "You have RA, go home and look it up" or "Your spinal injury will one day worsen to the point where you will be totally paralyzed, but we don't know when". Gee, thanks, Doc- get an "A" in bed-side manner?
For what it's worth- the only place I don't hurt is at WDW, but with my D starting college in the fall and a partner who doesn't understand my love of WDW, I guess I won't be going back as soon as I'd hoped. Bummer....

[Tinkermom07]

I've kept it to myself, it's just the 'norm' for me, everybody knows by now, we don't talk about it. I have chronic joint pain, muscle spasms, spinal problems, and of late, a displace SI joint with sciatica. The physical therapist gave me an electro muscle stimulator with a TENS unit also. I haven't felt this good in 20 years! It may be of help for some-they are good for post surgery, joint and muscle pain, migraines, sprains, you name it! They start at an affordable $50 online. I finally feel like there's some hope, because like some of you, I've been afraid of what the future will be like. I actually feel pretty good about it now with this. I still have to thank that therapist (see her in 3 weeks) for improving the quality of the rest of my life.

[Kynna]

I have Crohn's & RA and unless I am experiencing one of the skin related symptoms nobody would know when I am well or when I'm having a hard time unless I said something. I am pretty open about it because I am an outgoing person to begin with and I want people to know that when I'm not chatty or inviting people over it is not them. I only whine to may husband because that is his lot in life. (He whines plenty to me too) I have no desire for pity but I also love the fact that my friends will step in without me asking if I need something like Ice Cream Scooped. I think the biggest thing is I always try to do whatever I can to help myself feel better and then don't beat myself up when I've reached my limit.

How do I beat the blues??
1. Have reasonable expectations of myself and my body.
2. Always lead with a positive when discussing my health.
3. Don't give up on the things I love. I'll go to a concert or play even when I'm not feeling well because at least I'm there. So what if I spend half of the time in the restroom better than all of the time at home feeling sorry for myself.
4.I am lucky enough to have two children who are counting on me so I don't have time for the blues.
5. Disney ! Even when I'm at my worst a little Disney Vacation Planning can brighten my day.

[Laughaholic]

Thanks to everyone so much for sharing!

I do not personally deal with this, but know people who do.

For those who are lurkers out there, know you are not alone!

[GoofyMom]

I think I have something similar to Dina, although it's never been formally diagnosed because my Dr really could care less. He just prescribes more Naproxen. When I was PG with both of my kids, my pelvis would separate/dislocate. My boss actually made me take Mat Leave two months early because (his words) "it hurts me to watch you walk" when I was PG with Kid #1. When I was PG with Kid #2, one night I had to get up to go to the bathroom which meant get out of bed, walk around the foot of the bed to the other side, then 8 steps into the bathroom. 30 seconds max, right? It took me 12 minutes. That was 20 years ago. It improved over time and got to the point where I didn't hurt any more. In fact, in May 2008, I was running between 3-5K every 2 or 3 days for exercise. Then in June, I fell off my bicycle and it's hurt ever since.

What do you do if you live with it? Relaxation pain management techniques, ab strengthening exercises, take my Naproxen, rest when it's really bad and don't do too much walking (ie - I don't go shopping when it's flaring up).
Do you keep it to yourself? Most of the time, yes. Sometimes when it's really bad, I will tell people I was in an accident last year and still have some lingering injuries, but there's no point in going through the whole story.
Do you whine about it all the time? What's the point? Occasionally I wince or gasp during movement because that just can't be helped. And every once in a while, I get sick and tired and start feeling sorry for myself, so I post a "waaaaaa" status update on my Facebook.
Do people treat you differently? I don't want people to treat me differently because I'm aching, so I don't generally tell people unless they need to know for some reason. When they do know about it, they give me heck for walking too fast or "overdoing it" or my hubby will do the old "Let me do/get that for you" thing. Which I hate. I don't want to be considered helpless or useless.
Do you get to feeling sad & blue or angry with yourself? When I see people running past my house, I get jealous. I loved to run. In fact, I hated the days I had to take "off" for rest days because you shouldn't run every single day. So that's hard to watch other people doing what I loved to do. Sometimes I will have a little Pity Party, but it's not really a depression or anger issue for me. I have regretted going for that bike ride every day for the past year though. There are only 2 things in my entire life that I would do differently if I were given the chance... taking that bike ride on the morning of June 10, 2008 is one of them.

[Tracy M.]

Like a few other posters on this thread I have fibromyalgia which causes me daily and chronic pain.

The full check list of health issues that I have to micromanage on a daily basis are the fibro, right shoulder tendonitis, right hip bursitis, meniere’s disease and a new problem which appears to be originating in my left SI joint.

What do you do if you live with it?
I’m lucky at this point that my pain is more chronic aches, soreness and muscle tightness and not sharp biting pain. I manage it with a combination of cortisone shots & physical therapy when needed, deep tissue muscle massage and over the counter pain medication. I also have to work out in order to keep sleeping at night (I take a low does anti depression med at night to help me sleep which is a common off label usage for fibro patients). So that’s the big dichotomy, I have to work out fairly hard 5-6 days a week or I stop sleeping which causes a whole lot more problems but I have to work around the fibro and my other injuries to be able work out. The deep tissue massage while extremely painful (and causes a lot of it’s own soreness) really keeps the pain at the trigger points to a minimum.

Do you keep it to yourself?
Yes with the exception of my husband just because we know what goes on with each other through out the day and I can’t hide anything I do to manage my health problem from him. It’s harder to keep my meniere’s disease out of sight than it is the fibro. The presentation of my meniere’s disease when untreated is constant severe disequilibrium but even with the treatment I still have a few days a month where my mobility is completely gone and on those days even maneuvering down a flight of stairs is challenging and often risky depending on the severity. We call those days “being my own amusement ride”. During those periods I can’t even leave the house on my own. Using a wheelchair was never an option for during these off balance periods because my equilibrium is just gone to the point where I’m non functioning.

Do you whine about it all the time?
No, whining about it doesn’t make it go away so what’s the point

Do people treat you differently?
I don’t think people quite understand the severity of both the fibro and the meniere’s and what I have to in order to lead as normal a life as possible, they just think I’m being stiff and unbending in my behavior because I enjoy it. I’ll often send my husband off to the movies or out with friends on his own because it’s going to be a late night and it’s very important for me to maintain my sleep schedule. I go to bed and get up at the same time every day, I don’t have a choice. I will wake up at the same time regardless of how late I go to bed, I can’t just sleep in to make up for a late night and that is the biggest thing people don’t get.

Do you get to feeling sad & blue or angry with yourself?
I think frustrated is a better term for how I get occasionally, frustrated with my bodies inability to function like most other people around me.

I’ve gone on for way too long with this but I have one more story about managing pain and dealing with others that I think everyone on this thread will relate too.

On our last trip to Fla in April we stopped in Tampa for a few days to go to sun and fun with our friends in Lakeland before heading to my in-laws in the Key. Our friend’s father has a condo in Tampa so the plan was to stay there instead of a hotel. Only problem turned out to be that the air mattress they set up for us turned out to be as hard as concrete. So instead of sleeping that first night (I tried for a few hours) when my husband came to bed and laid down and found out that sleeping on the mattress was like sleeping on a rock he said “are you awake” and I was like “hell no” and he said it was too late at that point but that we would find a hotel in the morning. I spent the rest of the night reading instead. Needless to say in the morning I was a mess, I didn’t sleep at all that night and I couldn’t move my neck and my back wasn’t in much better shape. So instead of going to the air show with our friends my husband set me up in a hotel and after getting a massage so I could move somewhat I rested for the entire day.

[Tracy M.]

Originally Posted by wendybell

I keep it to myself as much as possible. I have fibromyalgia and chronic fatigue so, i get "you don't LOOK sick" more than i care to count.

The worst part for me is the doctors that didn't take me serious, needless to say they are all my ex-doctors now.

[GoofyMom]

Originally Posted by Tracy M.

The worst part for me is the doctors that didn't take me serious, needless to say they are all my ex-doctors now.

Ugh, I hear that! That's the situation I'm in, in that my Dr just doesn't understand how painful this is. After all, every x-ray he's ordered has come back negative for fractures. Therefore - no fracture, no pain. He prescribed a muscle relaxant, massage therapy and painkillers for my hubby's whiplash after he was rear-ended a year ago. That was a car accident, so it was a "real" accident. I fell off my bicycle. That's what kids do. So that's not a "real" accident. At least he prescribes me with Rx strength Aleve.

I wish I had the luxury of changing doctors. *sigh* It just doesn't work that way here. I'm fortunate to even have a regular doctor. There's a gross Dr shortage in Manitoba. There are many people in Winnipeg who cannot find a doctor and have to rely on Walk-in Clinics or Urgent Care rooms to get any medical treatment at all. So I continue to return to a man who poo-poo's my injury. But at least he is familiar with me and my medical history.

It's flared up really bad this past week. I'm going to try to get an appointment to see him this week and if I have to cry to get him to take me seriously this time, that's what I'm going to do. *sighs again*

[tigger_03]

What do you do if you live with it? I have yet to be officially diagnosed with anything. It will be a year in late August that my symptoms first started to appear. Or at least got bad enough for me to finally be able to recognize them. My current doctor doesn't seem all that interested in it other than saying 'you've got arthritis. Here is some arthritis meds. Let me know if they stop working.' He tells me I can not be referred to a Rheumatologist because no one will see me as my blood tests don't show anything. My sedrate is on the high end of normal. I've just about decided to find a new doctor (he wasn't all that nice to my mom at her last visit and just rubbed me the wrong one plus some things he said to me) but I just had to find a new doctor when my former doctor moved away.

Some days it's so bad that it's all I can do to get up out of bed. I have to have DH make sure that the cups are unscrewed, medicine bottles are loosened (and up out of reach of the kids), and anything else that I might need before he gets home is at least opened halfway. It's frustrating because I used to be able to do these things for myself and now I need help. I have a LOT of fatigue/exhaustion every day.

Do you keep it to yourself? My immediate family knows and sometimes I cant do the things I want to do. Or I do end up doing them and paying for it later. Only reason others know about it is because I'm unable to do something or they see me struggle to do something or walk.

Do you whine about it all the time? Not really as there is no point. Usually it's just a wince or something similar. Whining isn't going to change it or make it go away...no matter how much I wish I didn't hurt so badly.

Do people treat you differently? Sometimes people don't understand. Or say something about it being "in your (meaning me) head." Geez, thanks for the concern. Trust me I would love to not be in pain, unable to do some of the things that I love or want to do, or be like my old self. It's not in my head!! So usually I just say something about overdoing something and that's why I hurt. It' better than having to say explain the whole thing and not really knowing exactly what is going on.

Do you get to feeling sad & blue or angry with yourself? Sometimes. I wish I didn't hurt so much. And knew what was causing it (Lupus, RA, fibro or something else). It's hard living with no diagnosis at all and wondering if it's this or that.

[Tracy M.]

Tigger if you can, see a new doctor and keep going at it till someone figures out what's wrong. You will get an answer eventually though it might take a lot longer than you could imagine to get a diagnosis and treatment.

It took 3 years to diagnose my meniere's disease and I got passed around from my internist to a neurologist then to a regular ENT and then to an optho-neurologist and finally to a motion disorder specialist before finally getting the right diagnosis and treatment.

The comments about it being all in your head are enough to drive anyone crazy. I heard the "maybe your depressed" line multiple times. There's a difference between being depressed / sad / blue because you're sick and no one knows what's wrong with you and being actually depressed.

Just don't give up on yourself and treat yourself to the biggest Disney party ever when they do figure out what's wrong and get you back on your feet

[tigger_03]

Originally Posted by Tracy M.

Tigger if you can, see a new doctor and keep going at it till someone figures out what's wrong. You will get an answer eventually though it might take a lot longer than you could imagine to get a diagnosis and treatment.

It took 3 years to diagnose my meniere's disease and I got passed around from my internist to a neurologist then to a regular ENT and then to an optho-neurologist and finally to a motion disorder specialist before finally getting the right diagnosis and treatment.

The comments about it being all in your head are enough to drive anyone crazy. I heard the "maybe your depressed" line multiple times. There's a difference between being depressed / sad / blue because you're sick and no one knows what's wrong with you and being actually depressed.

Just don't give up on yourself and treat yourself to the biggest Disney party ever when they do figure out what's wrong and get you back on your feet

Thank you. I don't see myself staying with the current doctor I have. Only until I can find a new one. I thought this one would be a good one because it said he specialized in thyroid disease. I didn't get that impression at all. I felt like I got more answers and someone that was interested in my disease from the endo I saw once (and then was let go because she "didn't see 30 patients each day." I plan to find a new endo and bring up the joint issues and things I've been dealing with since last August.

I have gotten the "it's just your body getting back to normal" or "it's normal" following the birth of our first child. I didn't buy it then and pressed on until they finally did more tests. I don't plan to give up on this either and will continue to try to find out what is wrong. I hate the "it's in your head" comments. They just make me want to throw something. I got the "you're depressed" line as well. I probably was for the month of March of last year following my father's death. We knew it was coming (we had been trying to prepare ourselves since we found out about his diagnosis in 2003) but it's never easy when that day finally comes. But like you said there is a difference between clinically depressed and that which comes because you have no answers for whatever is wrong with you.

We plan to go back to Disney next year. I just hope that I'm feeling better by then and have more answers than we currently have. We are going to ask DH's 2 brothers and their families to go with us. Hopefully they will. We've already talked about the possibility of renting an EVC for that trip or seeing if we can borrow one of DH's aunt's EVC (they just use them for trips as they can't walk that far anymore).