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.
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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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
Of course why is because I have gotten older and fibro makes my pains worse. Aging is a bear and fibro makes it that much worse.
People take different pain meds, we use heat, stretching we all try or do something to help us.
The best thing I did was accept I have fibro and try to do the best I can everyday.
I have accepted it - for the most part. I think what I realized is that in the past three years, my doctors have not one time actually recommended a treatment plan! Not for the TMJD or Fibro. Every modality of treatment I've tried has been my idea, even doing complete blood work to see if there were underlying problems making my pain worse.
I still think I need to go in and ask for a plan - and tell her basically what I said here. She at least needs to know the extent of the problem so that she can TRY to come up with some better options for me.
As far as what has helped me, after I was diagnosed with Celiac disease I went on a strict gluten free diet and eliminated milk. I only eat organic and grow alot of my own veges.
I am on monthly IV vitamins. I also take IV Glutathione weekly. I also have CVID and take IV Gamma globulin weekly. The IV vitamins and glutathione do give me energy and the ability to function. Without the IV Glutathione I am pretty much homebound. What works for one of us does not always help someone else. Give yourself time to figure out what works for you.
I think we know not to overdo and try to avoid stress, they are our biggest hurdles. Of course, we do overdo when we have days our pain isn't out of control but we pay for it later.
We also know if you don't have fibro, you cant understand what we go through. I have read post by some women that said their husband said if they did this or that, but that DOES NOT work.
I have gone to a rheumy that specialized in fibro, a neurologist, podiatrist, orthopedic, gyn, gastrologist etc etc etc.
Good luck
TMDJ can be a major contributor to your overall pain problems. It causes pain in the face, neck, shoulders, arms, hands and upper back. It can also affect your balance - think of your head as a gyroscope.
Purchase a roomba robotic vacuum cleaner to help with housework. I have one - I'm picky - it does a pretty darn good job. As for the rest of the housework, why can't your husband help? Part of living with and managing our problems with Fibromyalgia (FMS) is learning to say "no" without feeling guilty and delegating.
And yes, breast reduction would help.
Also, ask your doctor for a presription for the Flector Patch. It is a non narcotic pain patch that only works where it is applied. It will not make you loopy. I use it to manage my degenerative disc disease on bad days. It works well.
Have you tried any of three primary medications used to treat FMS: Cymbalta, Savella or Lyrica?
Have your Vitamin D levels been checked to see if they are low? This can contribute to your pain levels. It is a common problem among people with FMS.
Have you got a copy of the book "Fibromyalgia for Dummies?" It contains easy to understand information about this nasty syndrome and alot of ways to manage it. You can find it online at Amazon.
We all struggle on a daily basis to get the basics and a few nice things accomplished. Thinking outside of the box and not expecting Rome to be built in a day are key components to making things happen. Who says you have to sit up in the car? Why not lie down in the back seat? Get a transport wheelchair (I have one) that will fold up and go in the boot of the car. Be sure to purchase one that has big wheels on the back - they will handle any type of terrain. Or, get a collapsable walker with wheels (Rollator) with a seat on it. Your doctor can write you a script - go to a medical supply store. You can go places and sit down and be pushed if needed.
It sounds like you have been left hanging in Limbo by every health care professional that you've seen. I'm appalled. If no one is recommending a regimen other than you, things have to change. Time to find some new doctors. Call your local hospital and ask for the physician referral service. See if they can match you up with a rheumotologist and/or a pain management specialist with an interest in FMS. And, find a good dentist who treats TMJD ASAP. Get your medical records together to take with you to save time and money.
Good luck to you and take care.
First priority is reducing the pain. Cymbalta- it will take 3 mos for full effect. If you increase the dosage too fastt you will get side effects and think it doesn't work. Give it time.
Meloxicam for inflammation. It takes about a week of daily use for full effect
Naltrexone 1.5 mg, IN THE MORNING. also takes 3 months.
Vitamin b12,d, c, magnesium, calcium ....
No gluten, no dairy
Monitor your sleep. Sleeping enough? Cymbalta will help.
Focus on getting the weight down. Check myfitnesspal.com
Aquatherapy or walking or yoga, or tai chi, or a combination. check you tube for free instruction. A little bit at a time. NOT 3 hours of errands.
Rest in between everything you do.
Above is what I do and it has taken me from bedridden to "almost normal". LOL. I am SO happy to be almost normal, I mean yesterday my husband and I biked 7 miles, slowly and with a break in the middle, and my shoulders hurt a bit today, but I think that's pretty good, no? Almost normal, I would say for an almost senior citizen.
I applaud you for being proactive. Glad to cheer you on.
Responses to the info here:
- Love the idea of Plan A, B, C - with C being, if I accomplish that bare minimum be happy for the day!
- I am lactose intolerant, so I'm good there - we switched to 95% organic last year, but it's been difficult to stay up on the whole foods cooking - that's one of the goals I have, to get back on track there! I don't know if we'll manage a garden this year, as we will be closing on the new house today and have so much else to do!
- My TMJD is not caused by issues that would be helped with a splint, unfortunately. I do have a retainer, but it's just to keep my teeth from moving any more - I have some bone loss in the jaw. The current thought is that my TMJ was actually caused by birth defect, as my ear canals are all wonky too.
- The roomba is now at the top of my list! DH does help with a lot - cooking, laundry, cleaning the kitchen and all the heavy lifting. He does 85% of our shopping on his own, I really hesitate to ask more of him!
- I have the Lidoderm patches - is that similar to the Flector patch? I will have to Google that
- I am going to ask my PMD to let me try the Gabapentin again, we didn't give it a fair chance since she wanted me to use it "as needed". I think that is similar to the other 3 fibro drugs, and has also been shown to work for the nerve pain in the TMJD. If that doesn't work we may look at the others
- We do monitor my Vit D - early 2012 I was at a 4.2 - the lowest my Dr has ever seen. I did two rounds of megadoses at was up to 39, I think. Then in December we found I was back down at 19, so I am in my second round of megadoses (I think 28 weeks total) and we will re-test. We are also going to re-test for RA, as I seem to have some auto-immune things going on with my skin.
- I totally agree about needing to switch doctors if my current one won't help with a plan. I have my next appointment in 11 days and I am going armed with a list of what I want in life, and a list of options we haven't tried. I am hopeful she will be responsive, but if not then I need to MOVE ON!
- Thanks for the suggestions on Meloxicam - I don't know what that is, but I'll look it up and add it to my list!
- The naltrexone I am interested in and have spoken with my PMD about, not sure when we will try it. She talks about it but hasn't indicated when we might start it.
I love the reference... I AM making my list and checking it twice! :)
I had a severe allergic reaction to Voltarin so I have to be careful what I use or take.
I tried an experiment last night at bedtime. Usually I just use my patches and gel while I am awake, and just take a Tizanidine (muscle relaxer) at bedtime. Last night at bedtime I picked my worst fibro spot and put a Lidoderm patch on it, then picked my next 4 worst spots and distributed one dose of my Voltaren gel between them and just took half a Tizanidine.
I was able to fall asleep at the normal rate, but I woke up several times throughout the night as usual, which was a bummer. So, for the money I guess it's not worth it.
There is another cream that you can try that may work much better than Voltaren gel. Ketoprofen cream has to be made up by a compound pharnacy. I use a 20% solution with lidocaine added. It has to be used in a specific manner. Clean warm skin after a shower or use rubbing alcohol first. Never layer it. And, you can add a layer of saran wrap (kid you not) for 2 hours ONLY to get better absorbption.
There are compound pharmacies everywhere. If one is not conveient to your home, the script can be faxed and they'll mail the medication to you. I use this on my back too. It works really well for me.
With regards to your TMJD, the object of the exercise with a splint is to relax the muscles in your face by putting your jaw in a resting position. I would think about seeing someone else or several someones to get this figured out. There has got to be a way to resolve it. Perhaps an orthopedic surgeon who specializes in facial reconstruction would be the place to start.
I hope your doctor is not planning on seeing other patients the day of your appointment - lol. Your list just keeps getting longer.... Take care.
As for the TMJD, I have seen quite a few doctors about it - and while many cases of TMJD can be resolved this way (or others), not all can. The splint doesn't work for everyone. My PMD actually did her two year pain management fellowship with one of the top TMJ surgeon's in the country, so she's seen a lot of outcomes. Not saying I will never get surgery, but the likelihood of a good outcome in my case seems very poor, and there's a high percentage chance that it will make me worse, which I really can't afford.
I am SUMMARIZING my list for my PMD appointment! :) My list is getting long... but I will separate it out for her, procedures, topicals, internal meds, treatments, then what I want to try at home!
Btw, I looked online at the Roomba's - I am definitely getting one! I'm also looking at the Scooba - does anyone have experience with that? It MOPS after Roomba vacuums! The ultimate in laziness, I love it!
I have put on a lot of weight since being diagnosed, as well, way more than 40 pounds, I'm afraid. I was just diagnosed with diabetes. Just what I needed. Another terrible chronic illness. Since then, I did a lot of research online about the eating changes that will be needed and it inspired me to do more cooking than I'd been doing. As with the Spoon Theory, I have to decide which chores I will do every day and now, cooking is at the top of the list. It has to be. I am already feeling much better and, although I haven't weighed myself, I feel more comfortable in my skin and I think I may have even dropped a couple of pounds.
I say this to encourage you (and myself as I write this and make it more physical in my own mind) to try to lose some weight before taking that drastic step.
Now, all that said, if you were really buxom prior to your diagnose, do it! I have a cousin who had 30 pounds of extra breast tissue removed in surgery and it changed her life. She had terrible dents in her shoulders from the pressure of her bra and had a hard time holding up her upper body. If you have breasts like that, I think it IS a dire situation and you should risk the surgery to get some relief. Personally, my giant boobs are just because I'm fat. I'm also hoping that the diabetes medication will help with my metabolism and help me lose weight, along with the dietary changes.
Good luck to you in getting your life managed in a way that makes you happy.