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Posted 4/15/2013 6:54 AM (GMT 0)
Hello,
I'm new to this forum - actually just found it this weekend, thanks to a referral from someone on a different forum (Thanks Quincy!). I don't usually participate, but thought I would jump in and introduce myself and ask for some feedback.

I was dx'd with TMJD three years ago. I'm also hearing impaired, and was just dx'd with fibro at the end of last year. I have arthritis in my neck and right shoulder - it may have spread further, but we haven't bothered to test since I'm not getting any specific treatment for that. In March 2011 I had to start with a PMD, as I haven't had a pain free day since 11/2010. It's been a really hard three years.

I used to be very active - I could work 50 hours a week, volunteer 10-20 hours, attend my kids activities, spend time with them and my husband, kept a clean house and took care of all the details for running it, attended church and mid-week study groups and still had time to spend with my girl friends weekly and had hobbies! In the Summer I would also take my sister's two kids for a few weeks, as she is a single mother. Looking back, I can't even imagine how I did it all! I thrived on just 6 hours of sleep at night and maintained a healthy weight.

Now I have had to cut back on work to about 20-25 hours a week. Fortunately we took my income out of the budget about two years ago when it became obvious that my working future was uncertain. Also fortunately, both of our kids are now out of the house (19 & 22), so they don't have to see me the way I am now. My house is a pig-sty, I've gained probably 40 pounds (no scale), and I mostly stay at home because I am so tired and not feeling well, or because I don't want my pain to get worse.

Up until January of this year I was taking (3) 5 mg Percocet's a day, plus Baclofen (low dose) during the day, Tizanidine (low dose) at night to sleep, plus nausea medication. In Jan we added extended release meds, so now I also take 10 mg OxyContin every 8 hours, and she just raised my Percocet to (3) 7.5 mg Percocet's a day.

Prior to the medication increase, I was pretty much at a 6 or higher all the time - every morning and night was more like an 8 or 9, and that was if I mostly just worked and then rested in my time off. Now with the addition of the ER meds, mornings are still the same, but I can get my pain level down some after just a couple hours with meds, can stay between 4-7 during the day, and I am more often at just a 6-8 in the evenings, with probably 4 nights where I am still at an 8-9. It doesn't really matter, but I measure my pain level just by my jaw, as the TMJD pain is the worst, because it's so sharp - but the fibro is kicking my butt too! I do notice that my "fibro fog" is lessened since the new ER meds, which is great. I am definitely doing the best now that I have in the last three years.

DH and I had a lengthy conversation tonight about how I'm doing, and what's changed in the past few years. I realized that my pain levels are on average a point or two lower with the change in meds, but my activity level hasn't changed. If I try to do anything, my pain just gets worse. Today we went to Home Depot & Lowe's for about 3 hours and out to lunch, and by the end I was tearing up (I don't cry rolleyes ), my jaw pain was about a 9 from looking up at flooring, my hips & back and right knee/foot were on fire. So what good is it to get my pain levels lower if all I can do is sit around and try not to HURT myself???!

I realized I'm only living about 30% of my life now, and I want it to change. So we made a list of the things that I want to be able to do - preferably with a pain level of 3-6 90% of the time. I am taking him with me to my next doctors appointment, and planning to ask the doctor - what do we need to do to achieve this? I'm tired of just being ho-hum status quo, I really want a game plan. Please tell me if you think I'm unrealistic - I just want my life back! Here's my list of what I want:

-To keep a clean house

-Do more cooking - do freezer cooking days for organic food (usually a 6 hr cooking day leaves me in extreme pain, can't be touched, and very cranky! (Sorry for the blue language!)

-help with light home improvement projects (painting and such)

-vegetable gardening

-exercising (lose some weight)

-shopping without hurting myself like today!

-go on drives around the state/ day trips - it hurts to sit in the car for an hour, and I don't know if I'll be able to walk around once we get where we're going!

-be able to ride in the car to California to visit our kids, which seems impossible right now - I can't fly because of a collapsed eardrum

It seems like an unrealistic list, but at the same time it seems like it should be nothing at all!

What I already do to keep going, on top of pain meds: Votaren gel, lidoderm patches, heat, cold pack, warm baths, yoga, reflexology, stretching, changing positions often, meditation/prayer, cuddle my puppy. I've done PT and still do exercises for the jaw, chiro made me worse, massage hurts like HE-double hockey sticks. Can't think what else, I know I'm forgetting things.

So, I don't know what we can do - injections? I really don't know what else is available or worth trying. We are considering breast reduction to help (TMI, I know), but I haven't met with a surgeon yet. One really positive thing is that I'm not depressed, most of the time I can still say that I am "happy" in general.

Sorry for the book, I tried to go back and shorten it, but wanted to put the details out there. If you're still with me, thanks for reading and I look forward to getting to know you here!
Posted 4/15/2013 8:58 AM (GMT 0)
Hi Trix and welcome to the forum .

I think at least in my situation in the early years when I was still getting diagnosis and trying to find the right meds,still having surgeries and holding out hope that none of this was real and all of it could be fixed and I was still denying that this pain all of it was to be the total sum of my life.

Many years of trial and error and struggling with my "Kevorkian years" as I call them I found that acceptance of what is and made peace with the fact that this is my life such as it is. I could continue to load up the meds lie around waiting for some miracle to cure me,living my own pity party or see if I could make a life I could live with.

I came searching and found a forum much like HW asked a zillion questions and got some ideas I could put to use. My first goal was getting healthier, stopped smoking after 30 years, hardest,ate healthier and added B12 to my meds,went onto a LA Med and eventually did away with my rescue Med. I planned on being active again and wasn't going to have time to clock watch a 4-6 he Med.

I started 3 rounds of a series of 3 injections a year did PT 7 weeks two times a year and use hydrotherapy no less then 3 days a week.

I had 5 children and a husband who bailed early in the game. The best I can say to you is set reasonable goals. Taking a few days to make meals is one of the things I. Did. Big pot of chili doesn't take much work
,lasts good in freezer,pasta sauce as well. I always made 2 meatloaves,stuff peppers all freeze well.

Sit and work when you can,use a bar stool at the counter,rearrange your kitchen if need be. Save an look into buying a small RV to travel in,you then can slow the pace,lie down or recline when needed or you can rent one these days pretty reasonable.

What my whole point to all this is when you get to the right point and from reading your post you are,reevaluate all your avenues, change whatever you need to,set obtainable goals and don't feel guilty about the short cuts you take. Look at the simplest of tasks and not say I can't do that! Look at it and say how can I. Do that?

You may have to change your way of doing things but the odds are your going to feel better about your life and surprised at just how much you can accomplish.

Everyone here understands pain and how to live with it. We are a sharing and compassionate group and love guiding others through the mazes of living with pain.

So again welcome and looking forward to finding out more about your struggles with CP

Vickie
Posted 4/15/2013 10:09 AM (GMT 0)
Hi Trix, and welcome :)

We have a few members here with TMJ issues, so I'm sure they'll be able to help answer your questions on that front :)
Posted 4/15/2013 10:50 AM (GMT 0)
Hi and welcome!

I too have TMJ, but mine is a really small part of the overall picture. Pain is relative and we all understand...no matter what our primary condition is.

First, you are not alone! I really understand all of your goals....since they basically describe what I would like to do. The problem is that I am further along in my pain realization that perhaps you are yet.

Each one (or at least most) of what you said you wanted to do is attainable, but not likely all at the same time. You may have to ask for someone to help to start with....like your daughters to start or even a good friend or a paid person. I use all on occasion.

The first one for me is the house because when it is a wreck, I feel like a wreck and nothing else gets done. I don't cook in a dirty kitchen and so you understand how that goes....we eat takeout...I get fatter...it's a pattern. Getting the house clean is a way to begin. It can start with buying something as simple as a Roomba to help pick up daily dirt. I just got two (kind of a mistake, but a good one) from eBay and paid less than half the cost of one new for both. I did have to buy extra batteries, but the replacement ones can be found on amazon for 40.00 for a pack of two...a really good deal because this covers both. Now, I dot have to beg someone to vacuum because that is one of the most painful things for me.

I will also be starting aqua "therapy" very soon. It is 5.00 per hour to use the facility, as opposed to a large copay if you have it ordered by the doctor. I still had to get the doctor to sign off saying it was ok, but it is a safe place to move my body and they have a lift chair if my back won't let me get out (like the last time I got into a pool). Again, it is small, but should help me get out, with exercise, no family "needs", and still someone there to help for 5.00....not bad.

What I'm trying to say is that you have a great plan. I love to do all of the things you have on your list too, but I know I can't do them every day...or even every week. You have to pace yourself, but your goals are reasonable. Get help with the house first and the other things will seem smaller. Do things in small bits, even if you have to start in one bathroom....whatever you can do. Just don't make your pain out of control because you will automatically avoid doing whatever caused it again if you do.

Good luck my friend. Each day is another new start to do what you want to do.
Posted 4/15/2013 2:33 PM (GMT 0)
Hi Trix and welcome to the forum. So sorry to read what is happening in your CP world. I can understand the TMJ problem, mine was caused by a car accident many years ago. I went through the splint business for a few years & got really disgusted with the care I was receiving. This is when TMJ was first being thrown out in the medical community & little was known about it. We had a hand full of dentist treating people and two drs were specialist & surgeons. My biggest problem with it now is getting my mouth to open when having dental work done & it sets off things.

I think Vickie gave you some excellent pointers & info. The one thing most of us struggle with is learning how to pace our self when doing things. I set myself up all the time and end up in trouble but I have no one but me to blame for that. Learning how to come to peace & realize & accept that you have a new life ahead of you will be one of the biggest hurdles to get over. It is not an easy one to jump over either. Some of us get professional help,this is how I got to where I am today & I am pretty much comfortable with my new life. Its ok grieve for your old life, just don't dwell on it. Like Vickie said, instead of concentrating on what you can't do, look at what you can do and build off of that. You will be surprised at what you can do.

You mentioned you have Fibro & I do not know if you are on any of the nerve meds used to treat Fibro. We also have a Fibro forum you may want to check out. The folks over there can tell you more about the meds used to treat Fibro. If you are not on any of the nerve meds that could explain why your pain level remains so high, as narcotics have little effect on nerve pain. \

Anyway, I wanted to pop on and say hello & welcome aboard. Take care...Susie
Posted 4/15/2013 4:30 PM (GMT 0)
Wow - these are great responses, thank you so much for your input! I am keeping a list of ideas of how I can make things better, and you all have given me several to add to the list!

I had my PMD run blood/urine tests at the end of the year to catch any deficiencies and we are aggressively supplementing Vit D (very low) and I was a touch low so I'm taking OTC B-12. I'm considering asking for prescribed Vit B shots, as I've read they can help with energy, any experience with that?

@nvrthesame98: What kind of injections did you get? My PMD has never mentioned any to me, so I don't know if there are any that work for Fibro. I do know that she won't do them for the TMJD as they are just as likely to make it worse.

I did PT a little over a year ago for the TMJD, which gave me some exercises to do and worked on posture. Maybe I should do it again with the goal of teaching me exercises I can do at home without hurting myself.

I started doing freezer cooking (organic) last year, but found I pushed myself too far. Now when I do cook, I will make 6 of whatever and freeze the extras. It makes me feel a little less guilty that DH does most of the cooking now, since sometimes he is heating up what I made. Using a bar stool in the kitchen is a great idea!

@RetiredMom: I totally agree, when the house is a mess, I am a mess! We are actually closing on a NEW house today, so we will be moving my existing business into it, plus moving our household. I always say the best way to do deep cleaning is to MOVE :). I will hire two people to help DH, so I will only have to pack & unpack boxes and I will also hire a lady to clean the old house once we're out, so I will be getting a fresh start soon!

Right now I own/run a solo operator nail salon/gift shop, which will work very well in my new house and allow me to spread out my clients so that I don't do any more 9 hour days. I am thinking about finding someone who cleans to trade services with. It's much easier for me to do a pedicure or manicure than it is to scrub things and all my equipment is custom built to be easier on my body. This is cheating, I know, but I'm okay with that! Plus I really do want a Roomba, I've been telling DH about it. It also might be fun if it drives our little dogs crazy lol.

@straydog: Thanks for the input, I definitely need to figure out the pacing thing. I tend to either do nothing and not risk it, or do too much. The problem is I haven't figured out what "too much" looks like! Most of the time I don't know it until my pain has already risen - and then I am either in the middle of something that must be finished, or away from home and still need to get back home.

My PMD had me try Gabapentin. I don't know if it would have worked, she wouldn't let me take it regularly for whatever reason, just said to use it on my "worst" days. Since I hurt every day that left me confused about how to take it at all, since she didn't want me to use it every day. I think she doesn't actually believe the drug companies in how they say the drugs should be taken. My pharmacist even disagreed with it, but of course I have to take things as she directs. I think I will ask her again to try this and let me take it on schedule.

Thanks again for the warm welcome, you've given me great ideas!
Posted 4/18/2013 8:37 PM (GMT 0)
Hiya Trix, Q here,
Now didn't I tell you that this was a way cool forum. Phealnopain told me that you had moved here and here you are now. My wife was getting these cortisone shots at her acupuncture points. It was a VERY MINIMAL amount of steroid but it did relieve her pain for a couple of years. Walking 1/2 hr 3 times a week is really a doable goal as is a small flower garden, both of which I do for exercise. Of course, the hard part is getting started but I'll bet you can do it. My cancer therapy, hormones, makes me crave sweets and also makes me fatigued so the exercise is a must. I'm at 175 from 150' not bad for 6' but I'm small boned so it looks like I'm wearing a fat suit, lol. So happy to see you. . . . Q
Posted 4/18/2013 8:53 PM (GMT 0)
Yes you did, and thank you! It is on my ever-growing list to discuss trigger point injections - though I found out yesterday that my insurance co-pay is $150 plus 30% of any supplies/drugs/agents used so it sounds a little scary expensive since we just bought a house this week!

Last year I randomly got interested in the organic biointensive gardening method - I spent 3 or 4 months reading books and researching on the 'net. Entertained my husband to no end. Now we have 3/4 an acre and I will get to put some of that knowledge to work, but sadly not until next year.

Your walking plan seems doable - and moderate, which is probably what I need. These next two months or so for me will be painting, installing new flooring, moving my business into our new home, and moving households. It doesn't seem likely that moderation is going to be able to be in my vocabulary - and I'm sure that for the time being these activities will be plenty of exercise! I will, of course, try to be as smart as I can about not overdoing it.

That does seem like a reasonable weight, but it's all in how we wear it, isn't it? DH is a bit over 6'4" and weighs in at 215 and will sometimes say he's "fat". Uh-huh. He's a has a long, lean build, so he thinks now he has a belly, though I beg to differ!

I'm off to paint...
Posted 4/18/2013 9:14 PM (GMT 0)
Hi Trixy,

Welcome to the boards:) I don't have much experience with TMJD but I was diagnosed with Fibro back in '95. As Straydog suggested, we have a great Fibro board here that you can post on as well for specific thoughts/suggestions about that aspect of your health. Walking is part of my every day routine which is helpful for not just my Fibro but my spine issues as well.

I just had a tooth extraction and it took them close to 17 tries to numb me up enough and it seems they really disrupted the nerves in my lower jaw and the pain is still there over a week later going into my ear. So I can only imagine what it's like for others to have this type of pain all the time and how difficult it is to eat, drink, talk, etc.

As you can see, we all have different journeys that have given us chronic pain but we all have empathy and compassion in common!

This is a great "family" here!
Posted 4/18/2013 9:22 PM (GMT 0)
Hello Trix!….I must have missed your introduction here…and just now read through your post. A very warm Welcome to you!

…just a couple of comments:….we do have a very good fibro forum here on HealingWell, so give them a visit when you can. Also…have you tried any of the meds used to treat Fibro…like Lyrica….Gabapentin…or Cymbalta?

Also…think long and hard before you let a surgeon touch the TMJ problem. Have you tried different sleeping positions to see if one is better than the other for relief. I also have TMJ…and it constantly bothers me as well. I de better if I sleep on my right side for some reason…but need to sleep on my back at times. I have also had a double lumbar fusion at L4-L5, L5-S1…and have never been able to get past the pain….and then Cervical problems on top of that.

Again Welcome, and Enjoy the forum!

SE
Posted 4/18/2013 11:16 PM (GMT 0)
Hey Trix -

I'm way behind too.... just wanted to welcome you here.....

Look forward to getting to know you better.... --Tina
Posted 4/19/2013 1:32 AM (GMT 0)
Thanks everyone - I look at the fibro board here from time to time, but it doesn't seem very active so far. I am on a fibro board through a different forum and it is great to read others' experience and get feedback on both of my primary conditions.

My PMD let me try Gabapentin a while back, but she didn't want me taking it every day on a schedule - I have no idea why. She told me to take it on my "worst" days, which left me confused as to exactly when I SHOULD take it. So, of course, taking one here and there willy-nilly did nothing. It's on my list to ask her for something for nerve pain at my next visit, thanks to all who mentioned it!

As for the TMJD & surgery -my PMD and I are both of the opinion that the odds of success are small and odds of worsening pain is huge, so surgery will be reserved until they come up with something with better success rates or all else has failed and I am ready to die from pain. Fortunately I'm not that far gone all the time yet!

The jaw pain is hard to live with all the time, more so than all my fibro pains. Plus I have all kinds of things I can do to alleviate the fibro pain, but not much helps the jaw except pain meds, muscle relaxers and in general trying to stay relaxed. I've learned to keep on eating and talking despite the pain and nausea. DH does tell me that I don't smile the way I used to, but I still do smile - just not the big goofy grin I used to walk around with.

I have found that I can't sleep on my left side, flat on my back or on my stomach. I do best if I'm on my left side sloped a bit towards being on my back. I've tried propping pillows, etc. I have to wake up during to night to change positions with my legs and the pillows because of the fibro. I hate being in bed. I keep thinking maybe I should get a body pillow, but I'm not sure we have room for it!
Posted 4/19/2013 1:47 AM (GMT 0)
You had mentioned the odd Rxed dosage rate on another forum, I still can't see a reason for it. It's not like its all that strong or dependence forming. Did you get any relief when you did use it? I have severe Oa and I find that Voltaren Gel works wonders on the smaller joints, best of luck . . . Q
Posted 4/19/2013 2:18 AM (GMT 0)
Thanks for sharing more...That is definitely odd that your Dr. wanted you on the Gabapentin "as needed"....since as you found, that is a med that should be on schedule each day and needs time to build up in your system. Hopefully you will get that sorted out at the next visit.

I certainly understand the sleeping situation! I have all sorts of different size pillows. Long ones, short ones, contoured ones, etc. All to have my spine in alignment when I sleep. I also wake up at least once every hour to hour and a half to change sides. My dog who has hip dysplasia so he will change positions as well:) It has definitely helped with being sore the next morning.

It's definitely a "process" with finding the best modalities of treatments and medications to help live the best life we can with chronic pain. I'm at year 12 now and tweak things all the time!
Posted 4/19/2013 12:36 PM (GMT 0)
Morning all - I've been up since a little before 3 from pain... from painting yesterday. Aaarg. I thought I was so careful too!

Quincy - I think in general she doesn't trust the drug companies and actually doesn't BELIEVE them when they say it's necessary to take them regularly. She's always trying to warn me of all the evils all these meds can do. If you recall from the other forum, she also tried to encourage me to take my OxyContin on an as needed basis. The only difference between the two events is my frustration with pain and wanting help - when she said it about the OC in January, I told her I hurt EVERY day and really wanted something to help all the time, so she said that's fine to take the OC on schedule. I need to go back to her and ask for the Gabapentin (or another med for nerve pain) and tell her I need it all the time, at least for now.

She used to often remind me that I'm never going to get better, so I'm starting to feel frustrated by her wanting me to be afraid of my meds. I do use the Voltaren Gel as well as Lidoderm patches and find some relief with them in the limited areas they cover, so that's nice. I'm sitting here now with heated booties on, a heated shoulder wrap, 2 lidoderm patches trimmed to cover 3 areas and a dose of Voltaren on. I am a picture for sure.

Snowbunny: I would complain more about the sleeping situation, since I only got 4 hours of sleep tonight, but I know that there are many others who are worse off than me so 'nuff said I think for me! I can't imagine if I had spine problems, but I'm sure it would be worse than me.
Posted 4/19/2013 4:27 PM (GMT 0)
Trix I am not sure but is this dr a PM dr? I have not heard of a dr telling a patient to take medication the way this dr is telling you to take it. Gabapentin has to be taken daily & usually has to build up in the system to get the correct effect in place. Many times the dose has to be increased to get the right therapeutic level. Have you considered getting another opinion with a PM dr? My husband is on it fr diabetic neuropathy & is on I believe 1800mg a day and that is not the max.

Anyway, check out our Fibro forum, those folks can give you lots of ideas about treating Fibro correctly. Take care...Susie
Posted 4/19/2013 4:41 PM (GMT 0)
Thanks, Susie - She is a PMD, just doesn't trust the drugs, companies or the way the work I guess. I am considering switching to a different pain clinic. I actually spoke to someone there earlier this week and they indicated they would be willing to treat me - I had a consult two years ago with them at the same time as with my current PMD, but went with her because she is "integrative". All I can say is that two years ago I still didn't believe that I wasn't going to get better, I never dreamed that I would still be in the thick of this.

My only difficulty with switching is that I am on a pain contract and the other clinic won't even see me without my medical records, which have to come from my PMD. So, I guess there's no way to know if they will be any better without telling her, canceling my contract with her and hope for the best. At that point I imagine she'll be pretty ticked off, so that bridge would be burned. I have my appointment with my PMD next Friday, and if I can't get some things resolved then that's what I'll have to do.
Posted 4/19/2013 9:30 PM (GMT 0)
…I'm in agreement with Straydog here, and how your PMD is handling your meds is out of the norm….and really could be robbing you of some relief. Nerve meds take at least a few weeks to get into your system, and some of them have to be at the higher dose for nerve damage.

I also have reservations as to she is handling your pain meds as well. BT meds should be used as such, and generally not part of your baseline meds, unless for a specific reason.

Changing Dr's may not be easy, but certainly something to look at, if you feel that your not receiving the best of care. It takes a very savvy Dr, who really understands Chronic Pain…and one hopefully is compassionate towards your living with 24/7 pain. We need all the help we can get.

Before changing PM's…I would give the one you have,...a good long, respectful, serious talk. Let them know just how much you are suffering.

Take care, and enjoy the forum!

SE
Posted 4/19/2013 10:37 PM (GMT 0)
I too miss my old life but unfortunately mus live in the one I have. So I do as much as I can on my good days and make my bad ones easier.

I can handle my on laundry and on good days iron what needs ironing. I can dust and pick up as I go from room to room on good days. I hire a cleaning lady to come in every other week and do the heavy stuff. I have a light cordless sweeper I can use between times or my husband will run the vacaum if needed.

I empty the dish washer when needed and we reload as we go and that keeps my kitchen fairly clean. I cook extra on my good days and freeze. As in I make two casseroles instead on one, I grill extra and freeze. I cook to have leftovers so its easy on my bad days.

I exercise, use heat and ice as needed, hottub and massage to help myself. I take pain meds and well as gabapentin for the nerve pain. I have steroid injections in my neck or back as well as nerve blocks when needed.

We travel, my husband is a angel about stopping often for me to walk and stretch as needed. I gave up flower beds and only grow what I can in pots. The only exception is a small vegetable spot this time of year, tomatoes, peppers, squash etc. It help keep me active.

I crochet and smock and find that my hands or worse when I don't.

On my bad days , I take meds as needed and use ice or heat and try to get through til I have another good day.

Makes you thankful for the good days.

I try to find ways to do what I want and need to, that is not so stressful on my joints.
Posted 4/20/2013 3:07 AM (GMT 0)
Thanks, ScreamingEagle - I definitely plan a thorough and serious talk - it occurred to me too that I need to ask her what her goal is for my pain management plan. Is it for me to be sedentary with pain where I am now, or more active with less pain than I have now? If it's the former then I need to move on. If it's the latter then we need to do what we can to achieve that. I guess I should have asked that question two years ago, but I really didn't believe that I would still be here after all this time!

@bluejeans: those are all excellent ideas! I also have a few hobbies that I engage in during times when pain keeps me still - digital scrapbooking, crocheting and wet felting, and I have enrolled in an online university to get my Bachelor's in Religious Studies (just for fun). I'm also an avid reader, so love to lay in my hammock.

I've come to believe that things I can do sitting still that make me feel productive are just as important as the things I can do with movement. I just want a better balance of the two!
Posted 4/20/2013 5:25 AM (GMT 0)
Religious studies . . . now that would be interesting.I have a degree in psych. that was concentrated on different religions definition of human consciousness. Talk about fascinating. When your mind is engaged your pain just sorta slips away.Look at Dr. Stephen Hawking . . . Q
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