Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Trix007
Hello! I am really wanting a treatment plan that is proactive! Any suggestions? I guess this is also my intro - as I just joined here recently!
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. Sorry, I know many of you have suffered longer and with worse things!
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 15-25 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 haha), 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 a little lower on average 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
B-I-T-C-H-Y!! Though DH would never use that word!)
-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.
Thanks in advance for any input!
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. Sorry, I know many of you have suffered longer and with worse things!
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 15-25 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 haha), 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 a little lower on average 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
B-I-T-C-H-Y!! Though DH would never use that word!)
-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.
Thanks in advance for any input!
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Marsharebel - I am currently an F cup with huge dents in my shoulders. I was a C cup by 7th grade, a D by 9th, DD by graduation. Then after each child a little bigger! Losing weight will likely get me down to an E (two sizes down). I prefer my weight at 150 pounds, which puts me right at a DDD or E - still way too much. I've actually had the arthritis in my shoulder since I was 28 (that's when it was dx'd) and it is very likely due to the unfortunate excess of mammary glands!
Yesterday morning I called another pain clinic to ask what kind of treatments they offer. I had actually done a consult with them two years ago at the same time I met my current doctor. I originally went with my PMD because she stressed that she's "integrative" and the other clinic seemed a little too casual about the meds - which I was pretty concerned about at that time! The gal I talked to was encouraging and indicated they would be happy to take me on, so when I go to my next appointment, if my PMD doesn't want to work with me I have a second option to fall back on!
One other thing I did was call Perdue, who makes the OxyContin, and spoke with one of their staff pharmacists. My PMD insists that a 10 mg OxyContin contains MORE than 10 mg of oxycodone, that it is much "more powerful", though she's never been specific on how much she thought was in them. The pharmacist confirmed what I thought, there really is only 10 mg! It's not that I want her to increase my script - for me it's about not having smoke blown at me. I'm not sure what her purpose is in giving me bad information - was it supposed to trigger the "placebo" effect and make me think, "wow! that's a ton of medicine, I won't feel any pain now!!"?
Anyway, I think my list is getting honed down and hope to have a really productive appointment!
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Then came the earliest clinical trials, including one, published in 1954, that raised incipient doubts about cortisones powers. In that early experiment, more than half the patients who received a cortisone shot for tennis elbow or other tendon pain suffered a relapse of the injury within six months.
But that cautionary experiment and others didnt slow the ascent of cortisone (also known as corticosteroids). It had such a magical, immediate effect against pain. Today cortisone shots remain a standard, much-requested treatment for tennis elbow and other tendon problems.
But a major new review article, published last Friday in The Lancet, should revive and intensify the doubts about cortisones efficacy. The review examined the results of nearly four dozen randomized trials, which enrolled thousands of people with tendon injuries, particularly tennis elbow, but also shoulder and Achilles-tendon pain. The reviewers determined that, for most of those who suffered from tennis elbow, cortisone injections did, as promised, bring fast and significant pain relief, compared with doing nothing or following a regimen of physical therapy. The pain relief could last for weeks.
But when the patients were re-examined at 6 and 12 months, the results were substantially different. Over all, people who received cortisone shots had a much lower rate of full recovery than those who did nothing or who underwent physical therapy. They also had a 63 percent higher risk of relapse than people who adopted the time-honored wait-and-see approach. The evidence for cortisone as a treatment for other aching tendons, like sore shoulders and Achilles-tendon pain, was slight and conflicting, the review found. But in terms of tennis elbow, the shots seemed to actually be counterproductive. As Bill Vicenzino, the chairman of sports physiotherapy at the University of Queensland in Australia and senior author of the review, said in an e-mail response to questions, There is a tendency among tennis-elbow sufferers for the majority (70-90 percent) of those following a wait-and-see policy to get better after six months to a year. But this is not the case for those getting cortisone shots, he wrote; they tend to lag behind significantly at those time frames. In other words, in some way, the cortisone shots impede full recovery, and compared with those adopting a wait-and-see policy, those getting the shots are worse off. Those people receiving multiple injections may be at particularly high risk for continuing damage. In one study that the researchers reviewed, an average of four injections resulted in a 57 percent worse outcome when compared to one injection, Dr. Vicenzino said.
Why cortisone shots should slow the healing of tennis elbow is a good question. An even better one, though, is why they help in the first place. For many years it was widely believed that tendon-overuse injuries were caused by inflammation, said Dr. Karim Khan, a professor at the School of Human Kinetics at the University of British Columbia and the co-author of a commentary in The Lancet accompanying the new review article. The injuries were, as a group, given the name tendinitis, since the suffix -itis means inflammation. Cortisone is an anti-inflammatory medication. Using it against an inflammation injury was logical.
But in the decades since, numerous studies have shown, persuasively, that these overuse injuries do not involve inflammation. When animal or human tissues from these types of injuries are examined, they do not contain the usual biochemical markers of inflammation. Instead, the injury seems to be degenerative. The fibers within the tendons fray. Today the injuries usually are referred to as tendinopathies, or diseased tendons.
Why then does a cortisone shot, an anti-inflammatory, work in the short term in noninflammatory injuries, providing undeniable if ephemeral pain relief? The injections seem to have an effect on the neural receptors involved in creating the pain in the sore tendon, Dr. Khan said. They change the pain biology in the short term. But, he said, cortisone shots do not heal the structural damage underlying the pain. Instead, they actually impede the structural healing.
Still, relief of pain might be a sufficient reason to champion the injections, if the pain were severe, Dr. Khan said. But its not. The pain associated with tendinopathies tends to fall somewhere around a 7 or so on a 10-point scale of pain. Its not insignificant, but its not kidney stones.
So the question of whether cortisone shots still make sense as a treatment for tendinopathies, especially tennis elbow, depends, Dr. Khan said, on how you choose to balance short-term pain relief versus the likelihood of longer-term negative outcomes. In other words, is reducing soreness now worth an increased risk of delayed healing and possible relapse within the year?
Some people, including physicians, may decide that the answer remains yes. There will always be a longing for a magical pill, the quick fix, especially when the other widely accepted and studied alternatives for treating sore tendons are to do nothing or, more onerous to some people, to rigorously exercise the sore joint during physical therapy. But if he were to dispense advice based on his findings and that of his colleagues systematic review, Dr. Vicenzino said, he would suggest that athletes with tennis elbow (and possibly other tendinopathies) think not just once or twice about the wisdom of cortisone shots but three or four times.
One reason I've been given is that you can only get so many steroid injections in a lifetime, and the second is that they can cause more damage. I never knew until I started researching recently why those things would be true, but luckily I just took their word for it and never pushed!
We all are perpetually trying to refine our own game plans to manage symptoms better.
2 things I'd like to mention:
First, Individual variation in reaction to meds and other treatments, and variation overtime to a particular treatment. No standardized reactions.
2nd, the one thing you don't mention is 'PACING' your activity. You mention doing less, but pacing is the practice of deliberately alternating brief periods of activity with rest (even just sitting reading) this allows the body to avoid flares.
P.S. Most likely the worsening of your TMJ is that your fibro is in your jaw now as well. Fibro tends to hit our weakest areas most severely.
Best of luck.
The TMJD has been around for a long time - for me the fibro is newer. I now know that I used to have TMJD "flares" that would last several months of almost constant pain - I thought they were ear aches! The fibro is newer - I can look back and see the symptoms in the last three years, but just got dx'd at the end of 2012.
Since fibro seems to be caused by the brain mis-firing pain signals (I'm oversimplifying), it seems likely that the TMJD caused the fibro. Too many pain signals sent from the jaw over the years I guess, my pain circuits are fried.
Your TMJD may have been a causative factor Only you know what else was in play in your existence as well. (In my case I have a long list of possibilities)
Even w/ TMJD coming first, the fibro can still ramp up the pain.
I hope you try out PACING, adding that sort of moderation can really help, and at minimum shorten recovery time.
Which really makes me realize that I MUST get a nerve pain med into my regimen, as it is completely lacking!
That is, I think, the most common cause though.