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SALESSE's Photo SALESSE Posts: 2,795
2/7/12 11:36 P

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hi

Hi i have fibro and notice that you are a reiki healer do you mean you do it to others or
that you take treatment

I have order some dvd by Steve Murray to learn Reiki also to heal myself
would like to know more about how it is working for you, as i just got those dvd
to become a healer

Hope you are doing good
tale care Flora emoticon emoticon



























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KJSUPERMOM01's Photo KJSUPERMOM01 SparkPoints: (3,570)
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2/5/12 11:48 A

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Love it! emoticon

One day at a time sweet Jesus!


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KJSUPERMOM01's Photo KJSUPERMOM01 SparkPoints: (3,570)
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2/5/12 11:47 A

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Hi there, You are the first person to say that fibro meds can cause stomach cramping. I was trying lyrica which seemed to start working so after a couple days on .25 mg twice a day , i up it to 50MG,same day terrible cramping. I have not had one of these episodes since I went gluten free over a year ago,so im sure it's the lyrica. BTW doctor wanted me to start at .75 mg twice a day. could not do it. I am freaked out about all this medication and most does not work anyway.
thanks Karen

One day at a time sweet Jesus!


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GINNAMOM's Photo GINNAMOM Posts: 659
1/26/12 11:18 P

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I'm a Reiki Healer too bad I haven't learned to heal myself yet. I also take lots of supplements and I go to A Chiropractor and get into the Water ALOT... I'm trying to loose weight to help things a bit....

Edited by: GINNAMOM at: 1/26/2012 (23:19)
Ginnamom living the country life in Pa. Originally a southern Bell from Virginia. Homeschooling
3 crazy fun wonderful exciting kids. Part time Doula. Happily married for 17 years to the love of my life Mike.

Pa momma

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BEKAHBELL's Photo BEKAHBELL SparkPoints: (7,387)
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1/21/12 10:49 P

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Hey Jessie, I'm glad to see someone else takes Meloxicam! haven't met anyone else yet. I also take 15mg, but I take it with dinner. at first my pain was worse in the evenings, but now it's the mornings, so maybe I should switch?? I'm going to the Dr on tues to discuss. A lot of my evening pain was plantar faciitis, and now I have that under control, I really notice the morning pain and all day aches.

Bekah :o)



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RMCAFEE23's Photo RMCAFEE23 Posts: 10
1/20/12 8:09 P

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My Doctor has me on 15mg of meloxicam but i am suppose to take half in the afternoon and half at night. Lately I have been in so much pain I don't feel like anything is helping! I also just started the vitamin D. I want to see if this will help with my bones, and I started my calcium again.

Edited by: RMCAFEE23 at: 1/22/2012 (19:35)
Roxanne
DIMPLESDANCE's Photo DIMPLESDANCE SparkPoints: (255)
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1/20/12 6:58 P

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I am new to spark, and so happy to find this group. I have been diagnosed with fibro for 22 years, and now a retired/disabled nurse. Had I known earlier how to even begin to manage this I may not be disabled now..
My toolbox includes
Vit D3 now 5000 mg daily
Calcium, Magnesium and zinc combo
Zanaflex (muscle relaxer) at bedtime
Ibuprofuen as needed
And as of yesterday Neurontin
My computer where my supportive friends live....
And my faith in love and light...

I was on Cymbalta for 5 years, but seen no since in taking a drug that did not make a significant improvement anyway.

I am very cautious about eating foods that are irritants.

Thank you for being you, and having this great group..

Gentle hugs to all!! emoticon

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MOON.NSTARS's Photo MOON.NSTARS SparkPoints: (7,177)
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1/19/12 11:10 A

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I'm on 15 mg a day. I ran out before I could get to the pharmacy - my legs and hands felt swollen and the all over pain hit a lot earlier than usual, so it does help. Before missing that one day, I hadn't thought it was doing much. Now I know better lol



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RMCAFEE23's Photo RMCAFEE23 Posts: 10
1/18/12 11:51 P

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How much meloxicam do you take and do you think it does any good?

Roxanne
MOON.NSTARS's Photo MOON.NSTARS SparkPoints: (7,177)
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1/18/12 4:40 P

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Hello,

This is a great thread. I'm always happy to learn new ways to manage this. I take meloxicam with breakfast, amitriptylline at night, and 2000 iu of Vitamin D daily. Since starting the supplement, the deep bone pain in my legs has completely stopped. My doctor has prescribed tylenol 1 (OTC here) and 3. DH gets frustrated with me because I try to take as little as possible (usually not enough). My prescription insurance does not cover any FM meds (lyrica, savella, etc), so I do what I can on my own.

The best advice for anyone with FM is to pace yourself. I frequently set timers for myself to make sure I spend enough time being active and resting. It can be VERY frustrating in the beginning - it took a long time for me to admit to myself that I really needed to do it. But in the end, I feel much better than I do when I push through.

I use volunteering, talking to friends and family on the phone/fb, volunteering (when I'm able), and baking as distractions. The cooking can take a long time, which upsets me sometimes, because I have to set timers and make myself take breaks. If I can concentrate on someone or something else, even for a little while, it gives me something to focus on other than how I'm feeling.

Three of my favorite possessions are my snuggie, heating pad, and electric blanket. Heat is wonderful when I'm hurting, but my skin pain is usually bad enough that I can't take a shower.



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RMCAFEE23's Photo RMCAFEE23 Posts: 10
1/17/12 1:32 A

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Hi I am 46 and I take 300mg Lyrica at bed time and I also use hydrocodine and take any where from 1 to 4 for pain, I also take Meloxicam 15mg. Heat is great!! I am in constant pain and lost my insurance so I am not sure what I will be doing for meds in the future.

Roxanne
RUANDA's Photo RUANDA Posts: 227
1/15/12 11:16 P

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I agree that heat and rest are key to managing pain. At least, they have helped me manage my pain over the years. I have been on Lyrica for years but it is ceasing to be of any use to me. My body has built up a tolerance to it, and now I need more and more medication to relieve the pain. Which I am not about to do. So I will have to be creative and find different ways to manage my pain. Exercise has helped me tremendously in not feeling so out of control of my life and so weak. These are my tools.



"The journey of a thousand miles begins with a single step." ~ Lao-Tse


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VICKICURTIS's Photo VICKICURTIS Posts: 257
1/10/12 6:44 P

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Awesome

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KJSUPERMOM01's Photo KJSUPERMOM01 SparkPoints: (3,570)
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1/10/12 1:27 P

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Wow, what a great letter! I think it may be an inspiration to others as well. I too have learned to manage my pain in all the ways you describe here. I am feeling better than ever. I have not tried strength training ,but will start i think. I am so glad your doing well! emoticon

One day at a time sweet Jesus!


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BLAZINGSHADOWS's Photo BLAZINGSHADOWS SparkPoints: (476)
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1/10/12 10:57 A

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Hi everyone :) I was diagnosed with fibromyalgia about 7ish years ago. My toolbox:

EXERCISE!! I can't tell you what this has done for me. I went from needing someone else help me get dressed and being confined to a reclining chair in the evenings to leading a fairly normal life. Weight training I think has been what has done the trick. I was also able to get off all meds and my pain - while always present - is at a pretty low level. I think it also helped me develop a new relationship with experiencing pain (i.e., I started recognizing that not all pain needs to be feared/avoided and that some is actually a good thing).

Eating differently - I've always eaten "healthy", but I decided to start cutting out foods to see if certain foods impacted my pain levels. I cut out all forms of flour (except for the odd treat now and then) and no grains (ex., rice, quinoa, wheat, etc.). I also seriously lowered my refined sugar intake. Basically, I eat food that I make from scratch using ingredients that have not been processed. Not only have my pain levels lowered, but I used to have IBS and this has pretty much stopped being an issue. I also sleep a whole lot better (I used to get about 2-3 hours a night in total, if that).

Positive Attitude - I used to let my pain take over my life. At the time, I felt like I didn't have a choice about that. I was depressed, angry, exhausted, anxious, and I let my pain be an excuse for not doing things. My pain also led me to become quite self-absorbed, as everything I did revolved around my pain levels and a fear of making them worse. In short, I was a miserable person to be around. Now I make a point of really acknowledging all of the wonderful things that are going on around me and I rarely use my pain as an excuse for not doing something. I am a completely different person now that I've changed my attitude, and my pain takes up a much smaller amount of space in my life (as well as the lives of those around me).

Foam roller - I don't have the money for massages, so I bought myself a foam roller at an exercise equitment outlet store. I use this when I'm experiencing higher levels of pain - and even though its so painful I call it my torture noodle, I feel so much better when I'm done.

Heat: Heat is amazing. I have one of those ones where you press a coin inside a fluid filled pack and it heats up and hardens to the shape of whatever you're putting it on (i.e., back, neck, leg, etc. Hot baths are also really helpful.

SLEEP: So important. Easier said than done though, I'm afraid.

So that's what's helped/worked for me over the last few years. I wish you all luck as you stand up against fibro!

ALASKASKY's Photo ALASKASKY Posts: 6,159
1/10/12 8:30 A

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I like the toolbox idea. I've been going along suffering and complaining. I'm stubborn when it comes to taking meds. But why? I will definitely start working on a toolbox.
emoticon

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JWICK18 SparkPoints: (327)
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1/9/12 9:27 A

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My toolbox consists of a heater in the bathroom (if I get cold I cannot warm up again), heating pad, 60 mg of Cymbalta (weaning myself off), Chiropractic appts, massages. I journal everyday my exercises and what I eat and take. I also take a probiotic almost every day, a DSF supplement and an Omega 3. I also have gastroparesis, so it is hard for me to find a happy medium between diets.

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LILYGALLATTA's Photo LILYGALLATTA SparkPoints: (1,608)
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1/9/12 8:23 A

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Here is what I have started:
Meds: Cymbalta 120mg, Lyrica 75 three times daily, Mobic 15mg daily.
Also, epidural Prednisone.
Physical: strech therapy, elliptical (not sure if I am going to continue).
Other: Reiki therapy (starts tomorrow), meditation, prayers, and heating pad.

Wondering if the glucosamine how well the glucosamine works? And those that work on computers all day, do you wear wrist braces?

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PICKIE98's Photo PICKIE98 SparkPoints: (267,216)
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1/8/12 5:18 A

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just for the fibro I stopped Celebrex and lyrica,, way too many side effects and wiped out my Rx coverage for the year..
I take 100mg tart cherry capsules BID, ibuprofen prn, Tramadol prn, lasix for my high BP, but helps rid me of fluid pressure on nerves;
I am onn other meds for other health challenges, but they do not adversely affect my fibro..

I was diagnosed less than two years ago and I found that the new Rx drugs made less than a 5% difference, with lots of side effects.. back to natural and started weekly hot stone massages,, THAT made a huge difference!! $30 for a 90 minute massage at our local School of Massage therapy!

I am blessed to be able to function to work yet,, later on, I may have to make the decision to have a home and food over those darned Rx meds.. for now I am willing to try alternatives...

SIX YEARS SPARKING!!

Lost 66 pounds!



 
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1/8/12 12:41 A

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My toolbox consist of, Lyrica 3 x a day, prozac 1 x daily, and a massage weekly. This seems to maintain the pain to a low range.

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1/7/12 1:05 P

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I think it works better. I am weaning myself off the Cymbalta

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/7/12 12:26 P

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Does it work like Cymbalta?
Cindy

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1/7/12 12:18 P

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It is that too, but it also helps with the adrenal gland and fatigue emoticon

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/7/12 11:49 A

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It looks to be an antipressant drug?
Cindy

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1/7/12 11:36 A

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It's a all natural supplement. Google DSF supplement.

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VICKICURTIS's Photo VICKICURTIS Posts: 257
1/7/12 10:56 A

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I googled dsf only thing came up was disulfiram ---used to treat alcholism. Is this it?

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1/7/12 10:54 A

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http://pureformulas.com/dsf-herbal-60-tabl
ets-by-nutri-west.html?CAWELAID=532164529

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/7/12 10:51 A

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What is the DSF?
Cindy

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1/7/12 10:22 A

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I suffer from both. My chiropractor put me on DSF, which really seems to help with both. I've found it online for half of what he charges me...of course. I've been w/o it for about a week and really notice a difference.

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/6/12 10:29 P

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My doctor just put me on progesterone cream instead of the oral. She thinks that my stomach is not absorbing the pill. I read that the cream is much more effective than the pill too so we'll see. I've noticed that I have alot more anxiety lately. Do any of you suffer with anxiety with fibro or adrenal fatigue? Just wondering if it is a side effect.
Cindy

Edited by: CWPRAISINJC1 at: 1/7/2012 (10:52)
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SALESSE's Photo SALESSE Posts: 2,795
1/6/12 9:44 P

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for medication i take codine contin 2, celebrex 1, pansaad to rub and also i have
a tube of something i rub that is comming from a chinese store and it cost 2,.39 and it is much better then the pensaad that cost 105.00 for a little bottle.

also i have a terapedic tub and soak in warm water and it help lots
|I agreed that heat is really good, cause when it is really cold and i go out i feel that i
just can hardly move

i also haave med for blood pressure and take lopresor, i take med for stone , synthroid for
my Thyroid and i have to take D3, but i am doing much better went down on my blood pressure pills, sleeping pills cause i can sleep form 5 to 11 am and i take a little nap and i am ok with that but once in a while i do need a sleeping pill i have fibromalgia since i was40
and now i am 68. so i did learn some trick and i forgot to do exercise is very good
i did not do as much exercise this year cause i had a knee replacement and this year in september the flair up were really bad.





























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VICKICURTIS's Photo VICKICURTIS Posts: 257
1/6/12 4:58 P

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How do you identify a fibromyalgia flair? This may seem like a dunce question but I have Ms and usually just blame pain on it but I saw info on fibromyalgia, which I was diagnosed with hrs ago but really haven't given much thought too.

I've been having Lots of pain. Just wondering emoticon

Vicki

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/6/12 3:07 P

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I've been trying different meds and not doing so well. The Cymbalta you really have to watch. It will put you into a brain fog and it is addictive. I just got off of it a couple of months ago. I tried the Savilla and I hated it. Felt like you did. emoticon
The pain specialist has me on Gabapentin (sp) but I am going to be getting off of that one in a month or so, I hope. He told me that Vicodin makes Fibromyalgia worse! EEK! I was on it for years but never got hooked but that is just my body. Some cannot do that. I still don't like it,
I had pasta last night and feeling awful today...may be another food out...
Cindy

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1/6/12 3:00 P

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I take 90mg of Cymbalta and still live with a lot of pain. I quit taking viodin as I do not want to get hooked. I take hot baths, I get up and stretch every so often, see a chiropractor and get massages. Anyone have any other advice?

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1/6/12 2:54 P

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I had to stop taking Savella. Made me a raving bitch!!

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/4/12 10:36 A

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My pain doctor just put me on Tramadol (barely touches the pain) and Gabapentin. I had to get off the Cymbalta after it was putting me into a "brain fog" and the side effects are crazy. BTW, the side effects for Gabapentin are bad too. I read that 20,000 people a year die of mixing prescriptions so I have really been trying to watch it.
Cindy

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NANASAMM's Photo NANASAMM SparkPoints: (19,145)
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1/4/12 10:25 A

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What's in my toolbox...

SLEEP. I definitely feel a lot worse if I'm sleep deprived. Everything hurts.
EXERCISE. During my "lost year" exercise was the furthest thing from my mind. It was all I could do to just get showered and dressed. My doctors kept telling me...exercise, exercise...exercise. Finally I signed up at the Y and did my water aerobics. I started to feel better. It was hard because I'm not an exercise person to begin with. But well worth the effort.
MEDICATIONS I take Cymbalta in the AM and gabapentin in the PM. I have one pesky area that I have pain pretty much all the time so my doctor added a muscle relaxant to see if that helps. I don't like to take NSAIDS because of the risks..
DIET. I love to eat whole foods...lots of veggies and fruits, almonds and whole grains. When I'm eating good food I just feel better overall.
HEAT. I loved going in the hot tub at the Y. This Y doesn't have one which is actually a good thing since I really shouldn't be using one anyway (BP) A long, hot shower always feels good. I have osteoarthritis and my joints love this as well.

emoticon emoticon emoticon emoticon

Edited by: NANASAMM at: 1/4/2012 (10:42)


"It is good to have an end to journey towards; but it is the journey in the end that matters."
~Ursula K. Le Guin


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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/4/12 10:20 A

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I have a new doctor (sound familiar)? He told me that Vicodin makes Fibromyalgia worse.
Just wanted to add that since I read that alot of you (including me) have been using Vicodin for the pain.
Cindy

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MAKURZ Posts: 6
1/2/12 10:56 P

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I take cymbalta, plaquenil, amitripyline, relafen, methacarbamol, propanolo, prilosec and zantac, calcium, vitamin d, co q10, b2, magnesium.

just got a heated mattress pad just before Christmas, feels wonderful after a long day at work. I learned the painful way that there is more than one type of massage and the deep tissue one is too painful. We moved into a new place in late November and the shower in the masterbath is wonderful, the hot shower helps so much. I haven't had time to try the jetted tub. I don't have much of a "toolbox", I rest as much as I can and have tried walking more, sometimes going with my hubby and the dog. There are 3 levels to the new place, the stairs are finally becoming manageable and a little easier to do. I think of it as forced exercise/physical therapy. :) I was diagnosed when I was 17, but it didn't get to this point of difficulty till I had a toxic exposure and had to be on steroids. The weight gain added to the problems. Now that I am in my own home and have access to my bike and walking trails I am eager to get back on track with fitness and lose the weight. I had lost 30 pounds but I noticed that by mid-summer some of it had come back, now I don't want to look at the scale.
The two biggest hurdles right now is the pain and the fatigue........and you all know what that's like.

JOOFARK's Photo JOOFARK SparkPoints: (891)
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1/2/12 4:47 P

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Thank you to each and everyone who are here and choosing to battle this illness.
Thank you for your inspiration and encouragement.
May 2012 be a year of good health and triumph for you.

My toolbox includes:
*Long soaks in the bathtub
*Layers of clothing in the Winter, including sleeping in gloves and socks as well as warm clothes
*Rest
*Exercise
*Eating well (more veggies and fruits and little or no junk food/sugar)
*Plenty of water
*No meds except for Excedrin for occasional headaches I quit taking my Savella which was, at first, a Godsend to me. It caused my stomach to cramp after about a year of use. Ibuprofen can cause stomach bleeding as well as strokes (and heart attacks, I think), so I'd rather do without it.

Thank you for listing your toolbox items. I'm sure I can find other things to try if or when those days return with intense, bone-deep pain. Winter is just beginning so we'll see how it goes from here...


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DORIJOBE's Photo DORIJOBE Posts: 21
1/2/12 5:47 A

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Hello everybody, I am new to the group..I have been back and forth on SparkPeople since 2007 or so and find that I end up getting busy and don't spend the time I need to, to keep focused...I am 58 and strangely enough I had actually gotten diagnosed back when I was 20 years old after severe back pain during a pregnancy and problems with delivery due to the back issue...upon seeing a rheumatologist back then, he was excited because he thought I had anklosing spondylitis based on changes in my sacrum on my xrays...they ran a genetic test and determined I wasn't carrying the gene so they told me I had "FIBROSITIS" and gave me a business card for a psychiatrist...thus began my many, many years of excruciating pain, lack of support, bouncing from Doctor to Doctor, only to be told it was all in my head...I wasn't overweight back then but the pain I was in made it so I couldn't even stand up very long during the day or I would be bed ridden for quite a few days...I don't want to bore you all with the details, but fast forward to today...currently I have been diagnosed with lupus, sjogrens syndrome, fibromyalgia and one doctor called it myofacial something, chronic fatigue syndrome..I have a host of accompanying things to go along with..
Basically, my toolbox currently contains:

ibuprophen = I take 800 mg when it gets too bad for me to deal with, actually, it doesn"t come close to cutting the pain totally but gives me some relief.
heat patches/little pea things for ice packs == my pain is helped with the heat when I am just so achy I cant hardly move, when I use ice, it's basically to numb the direct pain.
tens unit==I just purchased a tens unit again...I had practically lived with them on in the 80's and 90's and decided to get another one and use it.
chiropractic care== I see a great guy who uses the PRO ADJUSTER method on me, it's not the conventional manual adjustments, this machine determines where my spine is out and shows us the before and after...that has helped me alot.
Massage==when I lived in Colorado, I found out the hard way with the first massage at a massage therapy school that a massage, deep tissue is NOT the kind I can handle, I was hurting for two weeks...so, after that, I realized that a sweedish massage was good and I will tell the therapist if the pressure they are using is too hard for me or not...the price was right at the school...where I live now, I have a great gal and she has a decent price for me, $40 for a whole hour of a sweedish massage for me...
HOT BATHS==although, it isn't easy for me to get in and out anymore, so mostly hot shower...and I just snuggle up alot under fuzzy stuff and drink warm drinks...
Sleep is an issue for me because if the pain, so I am up alot at night and sometimes all night long like tonight...
I do take a couple of different anti depressants which help with the depression/crying and agitation and the blues, and the anxiety I had...I also am dealing with mitral valve issues, so more medication there....also, have had issues getting proper treatment for an extremely HYPOthyroid condition...am starting to get my levels up to at least IN THE RANGE, thank GOD...well, ladies, my heart goes out to each and every one as I completely understand pretty much what you all have been dealing with..I am praying for a better year this year and wishes for all of you to have a blessed year with alot less pain, lots of joy, and love and great health abounding... emoticon

"The Spirit of the Lord God is upon Me, Because the Lord has anointed Me To preach good tidings to the poor; He has sent Me to heal the brokenhearted, To proclaim liberty to the captives, And the opening of the prison to those who are bound; To proclaim the acceptable year of the Lord, And the day of vengeance of our God; To comfort all who mourn, 3 To console those who mourn in Zion, To give them beauty for ashes, The oil of joy for mourning, The garment of praise for the spirit of heaviness; T


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SALESSE's Photo SALESSE Posts: 2,795
1/2/12 12:41 A

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Azgerry i understand when you say walking is eassier then walking, for me it was dancing was easier then standing or walking, my doctor told me it was cause we only touch not putting much weight so lest pain..
but right now i have not dance for a year i had a knee replacement at the end of june
have to try to dance a little to see what will happen. I use to do the exercise of richard simmon, i did enjoy it the dancing in his dvd are fun , i want to start doing them again but
it see i am scare to do it again, must be cause i am afraid to be disapointed,but tomorrow i will do it or at least try it. will ;et you know how things will go

Good luck all for 2012




























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1/1/12 11:08 P

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heating pad, electric blanket, warm fuzzy slippers, gloves, vicodin, flexeril, massages from my bf, tanning, alone stress free time.

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KAYLSLYNN's Photo KAYLSLYNN Posts: 5,943
1/1/12 8:36 P

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SOUNDS LIKE VERY GOOD TOOLS. I AM TIRED AND GOING TO USE ONE OF BY BEST TOOL. A SOAK IN THE HOT TUB WITH HUBBY. GOD BLESS YOU AND YOURS KAY

GOD BLESS EVERY ONE THAT VISITS THIS PAGE JESUS IS LORD

KAY PARRISH


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BEKAHBELL's Photo BEKAHBELL SparkPoints: (7,387)
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12/31/11 3:46 P

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wow, these are wonderful ideas :) My toolbox is small as I am new to this

tool 1 - my savior Jesus, the ultimate healer and comforter God
tool 2 - my husband who has endless love an patience for me who I can turn to anytime
tool 3 - medication - Mobic (Meloxicam) and Tylenol for headaches when they come
tool 4 - good shoes!!
tool 5 - soaking my feet while I give my son a bath
tool 6 - pillows pillows everywhere!! for my back on the couch and surrounding me while in bed
tool 7 - rest when I need to, and be productive when I can
tool 8 - tv :) computer :) books and my new kindle fire!

coming soon:
massage therapy
herbs
vitamins
walking (maybe running)
yoga!
healthy eating plan

Edited by: BEKAHBELL at: 12/31/2011 (15:50)
Bekah :o)



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TASHINAWIN Posts: 32
12/21/11 11:30 P

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Great topic, Martha. It's a very good reminder over the holidays!

Meds: Over the years I taken various fibro meds.
For acute pain, 600 MG ibuprophen at a time (works the best for me overall- but brought on GERD).
-----------
Tens Unit.
Water Exercise in therapeutic pool.
Recumbent bike
Gentle stretches & chair exercises at work - 5 min. every hour ( I sit at a computer all day).
Warm herbal tea.
The Zone Diet (similar to the South Beach Diet- reduces refined carbs; protein at each meal)
"Stop leg cramps in 1 minute or less"- a vinegar concoction that works for me.
Heating pad
Epsom salt soak for feet (don't have a bathtub)
Weekly massage when I can (make sure it is with a therapist who has experience with FM)
Acupuncture (when I was first diagnosed it helped a lot- since then it hasn't helped too much)
Supplements: Fish oil, calcium,
Listen to Belle Ruth Naperstak's guided imagery and meditation cds: all of hers are exceptional
-Fibromyalgia & Chronic Fatigue (fantastic!)
-Ease Pain

Things that helped for a while before not working any more:
Ambertose (a Mannatech supplement) helped me a lot for a year or two
Cellfood. (liquid drops)- good for energy
A liquid mineral formula called "Essential Minerals"- I think it's only available at the Herb Store on Carlyle in Albuquerque) Really expensive, but it works great
Noni juice.





GBOOZER Posts: 199
12/21/11 8:21 P

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One of my first major splurges was a dishwasher, but some things still need to be done by hand. I have a folding bar stool in the kitchen that I use for dishwashing and stirring or "standing" over the stove.

AZGERRY1's Photo AZGERRY1 Posts: 13
12/21/11 8:10 P

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Hi,
Turned 70 this week. Have had fibro since I was 58. Used to be I could hardly move and it was like my whole body was on fire under my skin. The past two years of weekly chiropractic have helped LOT along with Magnesium Glycenate, a daily glass of Inflam-X (Metagenics) with super 8000 Greens and probiotics.

The fog and blurry vision and depression had mostly lifted after switching to Armour thyroid from Synthroid, and then after a cleanse, I turned to a gluten-free vegetarian diet and feel much better, positive and happy, not "waiting to die." (AND dropped 20 pounds without really trying - I was really working on alkalizing my body to deal with the fibro pain.)

But my back is still a huge problem if I stand for more than 5 minutes walking is much easier than standing for some reason). If I ignore the signals it can go into full spasm. So it takes me three tries to get the dishes done, because I resist taking pain meds because of side effects.grr. Would welcome any ideas.

For acute back pain, in addition to chirpractic and some stretching,I take Flexeril, Aleve, or if I can't stand it, Vicodan.



Edited by: AZGERRY1 at: 12/21/2011 (20:18)
JAE_HENNINGTON Posts: 6,577
12/21/11 7:04 A

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I use tramadol for pain which really only takes the edge off.. pace myself, work awhile, rest awhile.. I try to keep my thoughts positive and surround myself with positive people. I read uplifting material, and listening to soft relaxing music..my computer really helps me to keep the focus off the pain



Where there is no struggle, there is no strength.




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TERESAR62's Photo TERESAR62 SparkPoints: (228)
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12/20/11 11:36 P

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IM - I use tv commercials for that. I can clean an entire kitchen during the commercials of a regularly hourly tv show. Anything more than commercials and I wear myself out. Today I went shopping for Christmas dinner, sat and ate "chinese" (which I'm beginning to think is not good for me), and rested. Then the next hour I cleaned the kitchen during commercials. The next hour I did the baking I Had planned.

Since then I've been down for the count (thus the reason I think maybe chinese isn't good for me), and can barely concentrate to even type. But... on the good note, I'm ALMOST ready for Christmas, though everyone's Christmas presents that need mailed are going to be late. AGAIN.

But yeah, me and commercials work alot like your timer. LOL.

EMPATHICCELT's Photo EMPATHICCELT Posts: 17
12/20/11 12:15 P

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Since I seem to have rather nasty side effects to basically every serious "medication" that is prescribed to me, I have dropped all prescription medication that was ever given to me to battle my Fibro. I'm actually doing better now than I ever did on them oddly enough! :)

So what's in my toolbox now?

A heated percussion massager - I know some can't handle firm massage but for the knots and the steel rod sensation in my neck and shoulders it really is the only thing that gets my flexibility back.

My absolutely favorite thing - my ThermiPaq! (https://www.thermipaq.com/default.aspx) These are fabulous because you can freeze them for headaches and nausea, or you can gently microwave them for heat to loosen muscles and ease aches! They are filled with clay, not gel, and are less prone to bursting if you take care of them properly. It also has velcro on the strap so I can strap it on and not have to hold it in place or sit perched precariously!

Pain relieving patches!! - when the OTC pain meds aren't enough, I reach for Salonpas - they are patches that contain Camphor, Menthol, and Methyl Salicylate. They last up to about 8 hours and have worked for me on everything from tender point pain to menstrual cramps!

Hot showers - I start off mildly warm til I adjust and gently ramp up the heat til it is just perfect for me. Really really helps on those bad days when I'm so stiff I sort of lurch and half-fall out of bed.

New Food Lifestyle - this has really made the biggest change in how I feel!! If I have slipped off the wagon and have started feeling bad again, I go right back to the good stuff. High fiber snacks like Sun chips or Fiber One bars, veggie snacks like raw fresh salsa, high protein foods like Greek yogurt, low fat/low sodium cheese sticks, soy milk (Silk), SoBe Lifewater in my favorite flavors, fresh raw fruit (apples, bananas, strawberries, grapes), etc.
Changing what I eat has allowed me to rid myself of the horrible IBS, daily nausea, and constant acid reflux that I was battling on top of all the pain, exhaustion, fog, and depression. I've noticed a roughly 50 to 75% drop in the "I feel like I have the flu 24/7" type of pain, and I'm gradually becoming more tolerant of exercise too! I also have more energy and sleep much better.

GOOD SLEEP! - I did some research and found that good solid sleep really is hard to come by and yet is one of our best tools. Since I'm off prescription meds I've switched to using a nightly dose of Melatonin. It is naturally occurring in the body (or it used to be) and is often heavily depleted by prescription NSAID medications as well as by increased age. I use a "Sublingual 3 mg" tablet. Sublingual dissolves in the mouth or can be chewed for quicker absorption. Even my husband uses it to help him sleep better! You don't wake up feeling drugged either.

Warm liquids - I love my hot cocoa and hot teas! I am especially partial to a hot tea that contains red tea (rooibos). It is cleansing and relaxing. Not to mention quite tasty! I love the sensation of warm liquids going down - sometimes I even go for just a mug of warm broth or warm tomato soup.

Music - it is great for the spirit and can really lift my mood! Find a volume and a style that suits you and sink in to it mentally - sometimes mind really can conquer matter! :)

Soft loose clothing - I could care less about styles and trends, give me soft, flexible, and easy to wear ANY day!!

My soft fuzzy bunny slippers! These are no ordinary slippers either, they are killer bunny slippers! :D They keep my feet and ankles warm and guarded! :)

Gentle massages - I can't afford massage therapy, and generally I'm not that comfortable having strangers massage me on surfaces that are generally too narrow for my tastes. However, I happen to have a fantastic husband who, bless him, is gentle and patient and kind. When the bad twitches and shakes would take over and I could not unwind and rest, he would very gently stroke and massage my back. This always calmed my nerves and eased the twitches!

My resistance training band - I can't stand for very long, but I _can_ do some resistance training sitting down. The slow stretching really helps my flexibility and circulation! I try to do this at least 4 out of every 7 days right now. As the weeks go by I am also gradually increasing the number of reps I do for each type of stretch. :)

And finally - knowing my limits - I do what I can, when I can, and when I cannot I say so. I am trying to stop beating myself up mentally for all the things I haven't done or can't do right now and just keep focusing on what I CAN DO.



Edited by: EMPATHICCELT at: 12/20/2011 (12:24)
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TRY2KEEPGOING's Photo TRY2KEEPGOING SparkPoints: (35,458)
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12/19/11 8:44 P

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My toolbox includes the following meds:
Ambien every night
Gabapentin 300 mg at night ( the full 3x/day dose made me gain weight and have blurry vision)
Lidoderm patches
Darvocet (yes, I know it was taken off the market. I have just a few left which I am rationing. I am not able to take any other major pain meds due to allergies and side effects like agitation and decreased respiration--yikes)
Vitamin D

I also keep the following non-medication items in my toolbox:
Heat, heat, heat (heated mattress pad, bed buddy, hot shower/bath, heated steering wheel cover for my ccccold ffffffingers). Heat makes me feel better than most meds!
Exercise
Warm clothing and outerwear
Pillows of all sorts in various configurations depending on how I feel, I love the Mother Earth trigger point pillow heated in the microwave
Tempurpedic mattress pad
Orthotics and sensible shoes
Properly-fitting bra
Ameribag shoulder bag

This is a great topic--Thanks Martha!

You have to take care of yourself in order to be able to take care of others

Be kind to all because everyone you meet is fighting some sort of battle.



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GBOOZER Posts: 199
12/19/11 8:32 P

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Yep; my dad told me to rest until I was rested, then get up till I began to be tired, but that's more specific. I started out getting up during commercials and lying down during the television show.

I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
12/19/11 8:30 P

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I recognize a lot of these things! LOL

One no one has mentioned yet--and one of my BEST tools--is my timer and a technique called PACING.

I set my timer for my tolerance level (had to start over after surgery, and worked back up to 7 minutes so far!) and that's how long I work. Or sit at my computer. Or stand at the counter. Or whatever.

Then I stop and reset my timer, and sit or lie down for at least that long before I get up and go again. Sometimes the rest phase takes more than one seven minute segment, but I just hit the repeat button... and it keeps going off to remind me there are things to do.

You'd be amazed at how much you can accomplish in a "pittance of time" LOL

Write Santa and ask for a timer and try it!...

Kathy emoticon emoticon

"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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SEDONACAT's Photo SEDONACAT SparkPoints: (61,152)
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12/18/11 7:39 P

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I've had fibro since the mid-90's but it took 2 yr. to get a dx. Sound familiar anyone? I am lucky to have a really understanding rheumatologist altho I went thru several of those until I found him. The others kept pushing pills that had side-effects that were as bad as the fibro.

My Toolbox now has the following:
* Two Tramadol (Ultram) in the AM which will take the edge off.
* Exercise & movement during the day to lessen the stiffness which = pain
* Aleve later in the day if it is really bad but Aleve has a tendency to really bother my stomach if I take it more than 2 days in a row. It works so well, tho.
* Soaking in the tub-Epson Salts is helpful.

There are many days when it is so bad but I try to "suck it up" because I don't think anyone else wants to hear it. My DH is great but ....This grp is my outlet and I thank you for that.

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KAYLSLYNN's Photo KAYLSLYNN Posts: 5,943
12/18/11 4:15 P

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I WILL POST A LATER DATE THE DIFFENT THINGS I TAKE FOR JUST FIBRO ONE IS TRAMDOL AM & PM UNLESS I AM IN A LOT PAIN THEN EVERY 4 HOURS. I TAKE A LOT OV OVER COUNTER VITAMINS. IRON IS ONE I TAKE REGULAR VITAMIN C , FISH OIL, POTASSIUM , VITAMIN D TO NAME A FEW. I AM A DIETBETIC , HIGH BLOOD PRESSURE AND CHEMICAL IMBALANCE SO I TAKE THOSE MEDS.

WE HAVE A 2 PEOPLE WHIRLPOOL TUB SO I USE IT WHICH I AM GETTING READY TO DO RIGHT.

I AM GLAD SHERRIE TOLD ME ABOUT THIS TEAM. GOD BLESS YOU AND YOURS KAY

GOD BLESS EVERY ONE THAT VISITS THIS PAGE JESUS IS LORD

KAY PARRISH


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TERESAR62's Photo TERESAR62 SparkPoints: (228)
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12/18/11 4:01 P

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Hmm, My toolbox:

Meds:
Ultram - at least 3X per day, but on bad days I'll take 2 at those times.
Citalopram - I was taking cymbalta, but I slept too much, and was losing my hair and nails were breaking constantly. I think I I need to increase the dosage, but side affects on this are minimal.
Lidoderm patches - 3 per day, strategically placed on the nerve pressure points. THese things are a GodSend! Cant' believe they didn't have these years ago!
And because Cymbalta tripled my cholesterol (literally), I'm also taking something for that, as well as prilosec, as cymbalta also messed with my already in place Acid reflux, kicking it fully into GERD.

Vitamins:
Multi vitamin, Citracal, Black Cohosh, Vitamin C.

I have an electric blanket, a weighted blanket, and take lots of warm baths to make the body work. When I wake up - if I'm stiff, I take a bath. I sleep with the weighted blanket, and use the electric blanket when in the living room. :)

I avoid massages as well - they hurt. And hurt, and always have. I used to see a chiropractor, but that didn't help and was expensive, as it wasn't covered. I need a chiropractor that uses a very specific method that doesn't seem to be practiced in this state. I can't recall what it's name is, as I haven't had it in more than 20 years now - but they use the little device instead of cracking your back, and they test which place needs treatment by using the nerves. I remember it was illegal in Louisiana, which shocked the daylights out of me, and while some use that little device here, it's a supplement and arbitrarily placed, rather than checking the nerves. Manual manipulation chiropractors have destroyed my right shoulder - I"m not sure why, but manual manipulation throws out my shoulder instead of fixing the problem.

I work from home, so am on the phone all day - so exercise and movement is an issue. I'm allowed 2 15 minute breaks and one hour break all day. I cannot leave the computer because the nature of the job, so I can't just get up and talk to them standing up and stretching.

But on a good note- I crashed the doctor's office on Friday and got a shot for pain to stop the cycle caused by my exercise I was doing. YAY, I feel better. So now I'm going to work on stretches for a bit, and then move back to the treadmill. I'm thinking though, the temperature in the room was the cause of the issue. It was cold - I'd worn a warm sweatshirt, but had on shorts if I remember right. Figured I'd just warm up anyway, so maybe that's why the sudden onslaught of pain!



PAMSCHWETZ SparkPoints: (17,827)
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12/18/11 2:33 P

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I take glucosamine chondroitin,l carnitine,omega369,tumeric curcumin, a regular multivitamin, and prescribed by doctor gabapentin three times per day and a stronger dose of ibuprofen to take as needed for pain.I also use topical gels like icy hot when needed. Heat helps me too.I take epsom salt baths as warm/hot as I can stand them. I have a sauna blanket that I use for all over body aches. I also do the walking part one exercise with leslie sansone that i found at realage.com that is also on youtube. I have been trying to do that at least three times per week and intend to try to get up to five or six days a week maybe even all seven. It is only fifteen minutes and goes by quickly.There is a walking part two that I occasionally do and would like to get into the habit of doing at least once per week with part one so it would be a half hour workout. Each fifteen minutes is equal to walking one mile so pretty good and pretty easy for me to do. I take other supplements too but for other inflammation reasons for my uveitis in my eyes and a high blood pressure medication from my doctor.Thats all I can think of for now...

Edited by: PAMSCHWETZ at: 12/18/2011 (17:17)

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CTTAGENT's Photo CTTAGENT Posts: 1,613
12/18/11 2:24 P

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I agree with you Martha that deep tissue massage sends me into very severe pain instead of relieving. I have not had a massage in over a year, but I am doing some acupuncture right now to see how that does. I know that helps relieve tightness/pain in the shoulder/neck area for me. I am glad to have a hot tub at home because I can use it whenever I need to, particularly focusing on the shoulders, back and hips for relief. I guess that is like a massage, and I have complete control as to how close I get to the jet. Some days I get out of there and feel "flollipy."
For medication I have Lyrica (75mg daily in divided doses) as my daily item. I have been on it for 7 months now, but have a very fine line of how much my body can use: 50mg is like I did not take anything, 100mg gives me a nauseated feeling, 150mg gives me a severe headache. Robaxin when the pain/stiffness is on the rise, and Ibuprofen as I need it.
For supplements, I take magnesium maleate which is supposed to be better for fibro from what I hear, potassium, calcium, vitamin D, and multivitamin.
Exercise is a very important one for me. I go to the gym at least 3 times per week because otherwise my body is starting to yell at me. I have started doing some treadmill time at the beginning of my workout and then again at the middle or end of the session. I generally can get 20 minutes in (about 1 mile) that way if I am holding at 3 mph, but sometimes I can bump it up to 3.7 for a short period of time. It may not seem like a lot, but I do it without holding on, and at an incline of at least 2.5, based on how I am feeling.
Having my body in a sleep routine now does wonders for me because I am not waking up tired every day because I did not sleep well. When I have a night where I do not sleep well, it does take a few nights to get back on track, but I am at least able to live with that.
Food is a big factor for me also since I find that if I eat too many carbs I will start aching more, even though it is not an excessive amount of carbs according to the food pyramid. So I try to make sure I eat enough protein and get plenty of water to keep the muscles functioning. The other things I try to listen to how my body is doing as to when and how much I eat.
I also do my best to not let my body get cold. I will wear a sweatshirt in the house during the winter as long as I do not start sweating. I throw a light cotton blanket to cover my legs and hips when I am sitting down.

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LEAHSHINE's Photo LEAHSHINE SparkPoints: (2,141)
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12/18/11 12:49 P

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My tool box is still very small as I was just diagnosed six months ago and am trying to stay away from meds.
Homeopathic:
emoticon Massage Therapy and Acupuncture 1x/ week. I go to bed silly sore, but the next couple of days are magic!
emoticon Epsom Salt Baths, stress relief candles
Diet:
emoticon The cleaner I eat the better I feel. Processed foods make me feel heavy and sore
emoticon Lots and lots and lots and lots of water: makes me get up and walk to the bathroom more!
Supplements:
emoticon Flax Seed Oil
emoticon Green Tea Extract for engery
emoticon Glucosamine & MSM for joint pain
emoticon Multivitamin
Exercise:
emoticon 10 minutes of exercise a day. If I don't do this I regret it the next day!


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12/18/11 12:45 P

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My toolbox includes:
Medication: Tylenol 8 hr., 2 antidepressants Welbutrin and sertraline. Most commonly prescribed FM-antidepressant meds make me sleep too much. So I have had to stop them.
Exercise: water aerobics 3X a week and lately 1 hour 2X a week warm water physical therapy. I will continue the therapy exercises when the formal PT ends. The warm water pool is next to the big pool with much cooler water. Very convenient for me!
Tools: "Ryan" -When I call him,he does deep tissue massage for my 100's of trigger points, a bonger-rubber ball on a flexible metal handle, large hand-held massager, cold packs or frozen vegetables, hand massaging of trigger points around my knees, legs, arms.
Supplements: magnesium, calcium, Vitamin D, krill oil, Tart Cherry Concentrate, Vitamin E,

Maybe the trigger point bumps are myofacial and not fibromyalgia. I don't know the relationship. Some bumbs hurt and some don't. Massage or the bonger dissipate the bumps and a cool feeling sets in that area. Then the pain lessens considerably.

My knees get bad enough to think about knee replacements, but once the trigger point bumps are massaged away, the pain is pretty much gone.

I sleep my life away. I am 64 and since I was a kid I slept way more than everyone else.

Chris
emoticon

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?
CAREGIVER HELP SEE THE LINK PLEASE

It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris www.agingcare.com/


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GBOOZER Posts: 199
12/18/11 12:28 P

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All kinds of odd things in my toolbox: Lyrica, of course, but also good music and audio books, Terry Pratchett novels, chamomile tea, a million labor-saving tricks developed over the course of 20 years, my crockpot, microwave and bread machine, and my netbook.

THEDINE's Photo THEDINE SparkPoints: (3,164)
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12/18/11 12:26 P

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My toolbox is movement, walking every day, Omega 3 and Suboxone. Had gotten addicted to pain pills and I was amazed on how well Suboxone took away my pain that the doctor has kept me on it for pain. It is used for chronic pain over in Europe and slowlly is starting to be used here.

My road to recovery of health and weight loss.


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PEPPYPATTI's Photo PEPPYPATTI Posts: 36,546
12/18/11 12:15 P

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My toolbox includes: Lyrica, Cymbalta, Zipsor & Nucynta
My tools are to move around often & walking on the treadmill. I get a lot of pain in my hip joints so I will use my elliptical as well.

Team Leader of the Tennessee Team
Team Leader of the Seriously Special Sparkers!
Team Leader of the SP Class of April 13-19, 2014


We are what we repeatedly do. Excellence then, is not a an act, but a habit - Aristotle

Today is going to be a great day. How do I know? Because I'm going to make it so!

Patti - EST


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MARTHASPARKS's Photo MARTHASPARKS Posts: 2,718
12/18/11 12:04 P

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My toolbox includes:
Medication: I take Lyrica, Vicodin, & Savella. Other drugs failed me.
Movement: I gently stretch throughout the day and don't sit or stand for more than an hour.
Tools: I use a Brookstone massager, a tens unit, and a body back buddy. I sit in a recliner for support of my back and neck. I also use heating pads and heat wraps but I loathe ice.
Supplements: I take magnesium, Vitamin D, fish oil, coQ10 (ubiquinol), antioxidants, ribose, B complex, and brown seaweed. Note: Do NOT take any supplements without talking to your doctor!
Holistic: Reiki, Quantum touch, Jin Jin jitsu, myofascial massage, regular massage - never deep tissue because we think we want/ need it but it's pain inducing not relieving - and meditation. A warm tub soak using Liquid Needle Body Soak Amber Plus always breaks my pain cycle.
Exercise: yoga, tai chi, water walking and I am always warm before and after exercise by showering or bathing or sitting in a hot tub for a few minutes. I exercise every other day to allow muscle fibers to heal.

I'm sure there's more and I'll add them as my brain lets me!
Now, what are yours?

Martha
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(1 hour slower than EST)
I wish you all JOY and the fulfillment of your dreams.
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Fighting Fibromyalgia Team Co Leader
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MARTHASPARKS's Photo MARTHASPARKS Posts: 2,718
12/18/11 11:36 A

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I was diagnosed with fibro almost on the day 20 years ago when they named it. I am fortunate to be reasonably well managed most of the time. The frustrating thing is that fibro morphs on us. What works for relief may work for a long time - but it may also fail to give you relief for no apparent reason. So, I have developed a "FibroToolbox" full of things I can try for relief when one thing fails. Let's use this thread to share our tools for managing fibro.

Martha
Central Time Zone
(1 hour slower than EST)
I wish you all JOY and the fulfillment of your dreams.
Baby Step Spark People Team Co Leader
Fighting Fibromyalgia Team Co Leader
Spirited Underdogs Challenge Team
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