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Posted 9/19/2013 2:32 PM (GMT 0)
Hi all,

I apologize up front for the long-winded story here, but can't wrap my head around how to say this any shorter.

I recently retired from active duty military in June and have had to change doctors in the process. Yesterday I had another appointment with the 3rd new doctor (2 PCMs and 1 RA) since June and I'm getting very frustrated.

I was diagnosed with Fibro in Feb and have tried Elavil, Lyrica, and combination of Lyrica & Cymbalta. None of them have done anything to help. I'm having pain at ~6 on good days and up to 9 on bad days. I've been tracking and about 60% of days are bad/flare up days.

Each of these 3 doctors has told me there's really nothing else they can give me to help and the key is exercise. Well I am trying to stay active. I do about 30 mins walking & 30 mins stretching a day, plus ~ 45-60 mins of either light house-work, errands, or Tai Chi. I do this about 5 days a week.

Really the nutritionist I saw was the only one who seemed interested in trying to help me get my Fibro symptoms, pain and IBS under control! The others were basically "grin and bear it, have a nice day!"

Are they right? Am I just searching for something that isn't out there? Or are there other alternatives that I can try to get this under some semblance of control besides just diet and exercise?

Because right now my life has been reduced to staying home and minimizing my activity to less than 2 hrs a day, the rest of the time spent sedentary. And that's just not me! But if I do any more than that, I trigger massive pain flares and right now have nothing to help knock them down other than a hot bath or my massage chair, and those really just help me relax, they don't relieve the pain.

I've kept a positive attitude through it all by relying heavily on my faith, but I'm getting incredibly frustrated with all this and don't want to accept that there are no alternatives.

Thanks for any feedback and have a blessed day!
Mari
Posted 9/19/2013 3:14 PM (GMT 0)
I wish I could tell you there are other alternatives but I can't. I was dxed in 1982 and the Dr. that I saw at that time told me there is no cure and the only thing there is is pain meds which I prefer you stay away from and exercise. He said this fibro will spread until it entails your entire body and you must keep going or your muscles will go into atrophy.

Some of us fmer's meds do nothing as with me, I either am so spaced out on meds or they do nothing so I rely on my hot packs and at times ice. My tread mill broke about a month ago and I can really see my pain level on a rise since I am not exercising. I only went on it 20 minuets in the a m and than again in the p m but made a difference.

As far as meds go I had a fm buddy who was on pain meds for about 8 years she recently passed away from liver cancer which the oncologist said was caused by the pain meds. He told her pain meds are very hard on your liver as bad or worse than alcohol. My G/P was a pharmacist before becoming a Dr. she does not even want you taking Tylenol on a regular bases.

If you find something that works let me know.

Hugs and lots of luck, Linda
Posted 9/19/2013 3:27 PM (GMT 0)
Have you tried a muscle relaxer?
Posted 9/19/2013 5:50 PM (GMT 0)
If you find the answer to that please share. LOL....

I to am very active and all of the sudden I can barely do anything but work. This is not me and I have way to much I want to do. Not sure what is going on with me but one of the things I do is arm weights and all of the sudden my body feels different when I lift. I think you would describe it as a weak limb. I am still working out but less reps and they are getting further apart. Also my arms and legs are dimpling all of the sudden. Don't laugh but I am 52 and I fight aging hard. This has not been a problem for me and all of the sudden poof last month things changed.

I am weaning off lyrica and I take ambien, lortab 5 mg, muscle relaxer. There has to be something because I very much want to get back to my life. Even typing this my hands and wrist are protesting. Tonight I have zumba which is ridiculous for me and I don't do everything but it is so much fun that I try.

Good luck with your search!!!!
Posted 9/19/2013 6:27 PM (GMT 0)
We are all so different...trial and error, looking for ways to feel better. The good news is fibro isn't fatal, and doesn't cause damage to joints or muscles or any of our internal organs.

There are ways to help manage fibro. Learning to delegate, asking for help when you need it. Getting enough sleep...this is a tough one for many including myself. Less stress and anxiety leads to better sleep. Exercise helps along with doing a form of relaxation therapy. I do deep breathing and meditation. Eating well, getting a good balance of nutrients, our bodies need sufficient protein. Using moist heat helps with achy muscles. Taking time to stretch throughout the day helps with stiffness. Some have had good luck with water exercise. Some enjoy massage. Don't give up... hang in there, it really is trial and error.

Hugs, Robin

Fibro can be difficult to treat and having a good rheumy or doc who believes in fibro is a must.
Posted 9/19/2013 6:32 PM (GMT 0)
Yes, there are alternatives and I use them.  I never have taken the medications you mentioned but they were offered to me.  I chose not to take them.

 

I use ibuprofen with food, Tylenol, magnesium malate (malic acid/magnesium), vitamin D3, and a prescription muscle relaxer called Robaxin.  Your exercise routine looks good!  You are doing about what I do except I add gardening to that list.  I do do dumb things when gardening...like lifting a large bag of mulch over my six foot fence.  Dumb?  Yep!  But I just can't help myself!  smilewinkgrin

 

Go into Fibro 101 and you will find links about the malic acid/magnesium supplements and also vitamin D3 supplements and how they work in  your body.  Quite a few members have been helped with these.  Deficiencies in these can cause more pain.  I personally take 5,500 IU of vitamin D3 a day.  I can't remember the mg of malic acid/magnesium I take but it's in the link.  Magnesium malate is magnesium that is chelated....that means bound to something....and it is bound to malic acid.  This way the body absorbs it easier.  Magnesium malate is one of the best forums of magnesium to try.  It's easily absorbed and it isn't as likely to cause diarrhea like other forums of magnesium do.  If you decide to try this, start out slowly and see how your body adjusts to it.  I do not get diarrhea from them.

 

I take krill oil capsules.  I take them primarily for the Omega 3 in them...much better than fish oil capsules....but they are supposed to help with pain, also.  Since I'm taking several different supplements I can't tell you which ones help more.  I personally think they all work together.  I am able to do a lot more since using these....and especially taking the muscle relaxer.  That did make a significant difference in my pain levels and I have slept better, too.

 

Hot showers and a Bed Buddy help, too.  You can find Bed Buddies at Walgreens and other places.  You pop them in the microwave and they give off moist heat that feels so good.

 

Another thing I do is trigger point therapy.  I bought a wonderful book off Amazon called The Trigger Point Therapy Workbook and it has helped me a lot.  We have trigger points all over our bodies.  They feel like tender, sore muscle knots.  If you are having more pain in a certain area, you look that area up in the index, go to the page, and there will be an explanation and a diagram of the body to show you where the trigger points are that are causing the pain.  I healed a frozen shoulder using this book!  I now can do the backstroke!

 

I hope these suggestions will help you.  I'm not pain-free and I don't expect to be.  The only way I'd be pain-free would be if I drugged myself up and that is not an option for me.  I like to be in full control of myself.  But, I'm not moaning and in misery either. 

 

Do let us know how you are doing.  We are here for you because we really do care about you.

 

Sherrine

Posted 9/19/2013 6:49 PM (GMT 0)
I have post polio syndrome (similar symptoms to fibromyalgia).

Having spent over 25 yrs as a Personal Trainer and Cert. Medical Exercise Specialist, I can tell you that pain will be much worse if exercise (I mean light weight training for ALL muscle groups) isn't done regularly depending on your symptoms that day.

Each joint in our body has 4 different types of receptors...one being a pain receptor.  This will fire far more often as the muscle gets weaker.  As it gets stronger, it will fire less and pain will start to lessen.

Have you tried learning about a raw, plant based diet (which for many may take a few months to transition to).   Most supplements are chemicals and will contribute to liver toxicity the same way as medications (prescription and over the counter) do.  They are dangerous.  Eating plants is truly the way to increase one's health.  Take a look at this Website, there are lots of articles:  www.hippocrates.org

Also, focusing on learning how to heal instead of the symptoms themselves is the best thing.  Meditation and visualization is great too......I got rid of severe foot pain that I had for over 2 years that way.

Unfortunately Doctors cannot help much as they don't have any answers and those answers that are out there are mostly hypothesis.  They will change with the weather.  It isn't their fault and we cannot get angry with them.  They can only do their best with the information they have ....and it just isn't there.  The Scientists are literally arguing over who is right!!

Good luck!

 

Posted 9/20/2013 3:01 AM (GMT 0)
Don't give and try not to get discourage. I use to get upset when people would say exercise is the best med for it. I couldn't imagine how that would be. I would do some patty cake ones and see that is not true. As years passesd I tried numerious fibro meds with tons of heavy narcotics. All it did was cause havoc and addiction. I wanted off my narcotics because my pain was severe with them. Sometimes when people take long term narcotics it can cause the opposite efffects. So I felt I was in a viscious cycle. Then the narcotics caused severe depression. I bet your Dr's are just trying to keep you falling in the trap that many of us have went through taking long term narcotics. There is a group of patients that have no problem taking narcotics, but for most it does cause issues of addiction or dependency.

So in saying this I now know why exercise is number 1 for treatment of fibro. You have to push yourself at first then you will see an improvement. I haven't heard one person say it doesn't work. I have other health issues too so I decided I had to have something to control my pain that was less addictive. So I take subutex. Many dr's are using it for chronic pain. You might want to ask or look into it.

Heat and vitamin supplements are great for fibro too. I am sorry your having trouble with your Dr's. Do you think you approach them wrong about pain management?

Post Edited (ak angel) : 9/19/2013 9:08:33 PM (GMT-6)

Posted 9/20/2013 3:10 AM (GMT 0)
No, I don't approach Doctors at all.  I manage things on my own as I know they don't have all the answers. They do their best which is great but there is so much we can to get ourselves healthy....that isn't their responsibility, it's ours.

I absolutely won't take any meds or supplements...ever.  For some, they may help but not for me.

 

Posted 9/20/2013 4:45 AM (GMT 0)
First off, Philipians, keep up your walks ! That's going to help you SO much in the long run !

I'm one of the Fibro people for whom diet and exercise was 100% of the answer. As others have mentioned, all of that hard-core, prescrip stuff just whacked me out really bad... insomnia, feeling out of body, etc.

For myself, my diet had a lot more to do with my IBS, and exercise seemed to be the very best treatment, for mis-firing nerves > Fibro.

As I've talked about many X's, when I first started "struggling" to exercise, and get back into shape, after not exercising or eating right for 35 years, of course I got REALLY sore ! No, I mean like I could barely move.... for a few days afterwards ! But interestingly, the muscles that hurt, were the muscles I just beat the heck out of ! And NOT some stupid BS Fibro pain, that would normally be making me miserable for no reason.

In other words, it's like the more "normal, expected" aches and pains I gave my body from working out, the more it distracted my Fibro, from making up bogus pain on its own !

Now, I will be the first to say, I have not "beaten Fibro"... or IBS for that matter. But I've knocked it down by probably 95%. And my IBS is in complete remission. I'm working out (both resistance and cardio) 6 days a wk, for about 10-12 hrs total.....

And I eat like a freak ;) Tons of fresh fruits and veggies, tons of lean meats, nuts, eggs (jumbos, by the gross, silk soy milk :)

Zero bread, pasta, rice, potatos, or dairy..... or pretty much anything heavily processed and packaged.

I do eat a very "restricted" amount of oatmeal, twice a day. Other than that, I try to stay away from all of those condensed / processed carbs.

Oh but in spite of the stuff I don't eat, I still manage to shovel down 4000-5000 cals a day :)

If "diet and exercise" sounds to short and simple, please understand that having OCD, I obsess over diet and exercise with probably half of my lifes energies ! .....whereas, many people will eat a few healthy things, for a little while, and / or start to workout, for a little while, then when it doesn't just magically change their whole life, they give up.

I got this health and fitness thing stuck in my head 4 years ago, and now it's just my normal, daily life.

Peace,

Fish

 

Posted 9/20/2013 6:24 PM (GMT 0)
Awesome Fish.....now it's time to abort the OCD!! I have a friend with that. WOW!! It's very stressful to live that way.......Have you tried meditation. Being calm will SO increase energy and immunity. It helped me a lot.
Posted 9/21/2013 4:07 PM (GMT 0)
Don't overdo anything.

I am an amateur photographer and my specialty is in landscapes. Unfortunately I cannot figure out how to not "overdo" it, since I get so involved with getting just the perfect photo I forget that I will pay the price the next day (or more).

I've had fibro over 15 years and manage the pain with Elavil and Gabapentin. It's not ideal, but much better than nothing. Try to recognize your limitations and go easy on yourself.

Laughter seems to help me - a lot!
Posted 9/21/2013 4:45 PM (GMT 0)
Lealee......I get that too with my post polio syndrome. It's hard to know when you have done too much. Sometimes, I walk my dog too far or don't rest my mind (meditate) or play too hard with the grandkids and for 3 days afterwards, the pain and exhaustion is worse. Rarely does this happen however as every day, I schedule 10 min relaxation or guided relaxation breaks. I'm sure you know what your limits are too so can you add a couple of these (lying down) breaks in to your day? Also, the best 10 minute guided relaxation CD's I have found are
They are wonderful! I use them every day.
Hugs and all the best.....
Sue

Sue, I edited out the link. Posting links that sell products is considered spam on the forums.

Sherrine

Post Edited By Moderator (Sherrine) : 9/21/2013 11:41:22 AM (GMT-6)

Posted 9/22/2013 6:30 AM (GMT 0)
Mari,
This disorder is different in different people but learning to wall off the pain in a separate part of my brain has become my way of life. I just have to keep going until I can get to bed and pray for sleep some nights. My doc has me on flexeril which has really helped me move more and I have a pain med for the worst nights. Strangely enough my pain is more tolerable the busier I am. Sometimes it does catch up with me and drag me down and my attitude, knowing that I'll probably get back up an keep fighting tomorrow keeps me sane. After many years my family is much more understanding and caring and more willing to help when they see me struggling. Wishing you better days. ~Jeannie

"As one goes through life, one learns that if you don't paddle your own canoe, you don't move."
~ Katherine Hepburn.
Posted 9/22/2013 4:02 PM (GMT 0)
Well Vital, if OCD was my "only" psych disorder, I would probably not be too bad off ;) I also have pretty severe ADD, body dysmorphia, severe hand-eye coordination issues, which led to unimaginable problems in school / growing up......

I agree that OCD is mostly negative. But at the same time, ironically, it has been the source of some of my biggest accomplishments in life.... not the least of which, was knocking Fibro and IBS, nearly, completely out.

I always have to laugh when I hear > "Wow ! That's just amazing how focused you stay on your diet and exercise" ! ....and I'm thinking, "No. That's the easy part. Trying to focus on any other important parts of my life, is the hard part".

Peace,
Fish
Posted 9/22/2013 4:19 PM (GMT 0)
Sorry Sherrine...I didn't realize that.   I am not connected with the Company at all, I had purchased the CD's a few years ago at a store in Toronto and they help me so much so just sharing but I certainly understand and respect the rules. 
Posted 9/26/2013 1:54 PM (GMT 0)

Vitality Lady said...
Lealee......I get that too with my post polio syndrome. It's hard to know when you have done too much. Sometimes, I walk my dog too far or don't rest my mind (meditate) or play too hard with the grandkids and for 3 days afterwards, the pain and exhaustion is worse. Rarely does this happen however as every day, I schedule 10 min relaxation or guided relaxation breaks. I'm sure you know what your limits are too so can you add a couple of these (lying down) breaks in to your day? Also, the best 10 minute guided relaxation CD's I have found are
They are wonderful! I use them every day.
Hugs and all the best.....
Sue

Sue, I edited out the link. Posting links that sell products is considered spam on the forums.

Sherrine

I am able to take a break and relax during the day if I am home. You know, I do have some relaxation CD's that I had forgotten about! I've been in my new home almost 2 years and I just remembered where I tucked them away! Thx for the tip Sue turn
Posted 9/26/2013 8:30 PM (GMT 0)
Fantastic Lealee.....so glad to help.  Now, I am actually going to do that myself right now as today has been a long, busy workday and I'm 'feeling it' a bit.  Think I'll do my half hour cd instead of my 10 minute one.  Emails can wait and my hubby will walk our pup tonight!  It's all about priorities.  I like to do my relaxation in the garden in nice weather as well and it's lovely today.  I may even 'nod off'!!  Enjoy your relaxation Lealee!
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