New To Fibromyalgia - Trying Various Treatments (Exercise, Ribose-D, Mucinex, etc.)

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antihero.zero
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/9/2010 9:26 AM (GMT -7)   
Hello Community,


I am the husband of a 26-yr-old woman suffering from what we believe to be FM. My wife has a tendency to develop sinus infections, and though she has used Mucinex before for those symptoms, we recently tried using it for the FM symptoms in a more prolonged fashion, but her fatigue became so severe that she was unable to get out of bed for the entire day. From what I've read regarding this, Mucinex treatments for FM patients increase body pain, not fatigue, during the first several months of use.
~~~~~~~~~~

Hi antihero and welcome.

Healing Well is a support forum and is not intended for research or medical advice. Please reread the forum rules before posting any more. Below are two rules you need to heed. It would be nice if your wife would join the forum since she is the one who has fibromyalgia. We all appreciate your concern for her but your studies are not what this particular forum are all about.

Thanks for understanding.
Chutz

6. No posts regarding research studies, surveys or clinical trials without obtaining prior approval from the forum administrator before posting to the forums.


10. No posts of lengthy articles. Sharing information is allowed, but the forums are not to be used to publish articles. It is an improper use of critical forum resources.

Post Edited By Moderator (Chutz) : 2/10/2010 11:10:33 AM (GMT-7)


MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 2/9/2010 11:27 AM (GMT -7)   
Welcome and thank you. My goodness, what an awesome husband you are! I realize you have a medical background and are able to do for yourself and your wife much more than most, but it is your compassion and love for your wife that is so outstanding. I applaud you and I really hope for the best for both you and your wife.

I used D-ribose in powder form for about two years and I cannot honestly say that it helped me. I also tried a gluten free diet, in addition to no coffee (caffeine or regular), and no sugar cane...didn't really help. Massage is simply too painful for me. I also tried a Chinese master of acupunture combined with a technique, can't think of the name, whereby he works on the knots in the muscles and I endured this for 7 weeks, twice a week and cannot say I was any better after that treatment.

I think the best that works for me is exercise, getting enough rest, including a nap during the day, if I feel I need it, and trying to limit the amount of stress in my life. I gave up a well paying job four years ago because of the stress and it was in the healthcare field.

I take prescription medications in addition to supplements. Some days, I over-exercise. Some days, it seems the exact same amount of exercise does me so much good. I just can't seem to get the right combination, and I was diagnosed over 20 years ago.

Again, I welcome you and hope for the best for you and your wife.
Gentle hugs
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 2/9/2010 12:29 PM (GMT -7)   
Hi and welcome. You have been a busy man with all the research you have done. The first several years after being dxd with fibro tried ignoring it and wishing it away, couldn't accept the dxs. The fatigue has always been worse for me and still is most of the time although the pain is catching up. The meds I am on I was on when I was dxd with fibro, amitriptyline for anxiety and depression, celexa for the same. Then getting close to three years ago I suffered a horrible loss of a dear loved one that sent me into a downward spiral that hasn't stopped as far as the pain goes but I think the fatigue has leveled off. Many with fibro have suffered great trauma that has been the beginning of fibro or made it worse. I tried cutting back on the amitriptyline a little almost two years ago and had a two week burning flare that was unbelievable so went right back up and haven't felt that kind of pain since so I do think it helps me with the pain somewhat.
 
We all differ when it comes to how much exercise is enough and how much is too much, kinda a fine line between the two. If I overdo it I pay. On the other hand if I don't stretch enough and get enough exercise it makes the pain worse.
 
I do have vicodin to take but only take it when I can't stand the pain any longer. I have osteo arthritis and the pain from that can be worse than the fibro many days.
 
Many with fibro are low in Vit D and Vit B12 so make sure your wife has her checked.
 
Check out the fibro 101 thread, second on first page, it contains a lot of great info about many things.
 
If your wife feels up to it maybe she would like to join us. Just talking to others that share what you feel is helpful sometimes.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 2/9/2010 12:50 PM (GMT -7)   
Hi and welcome to the forum. It is great that you are helping your wife find answers to
help with dealing with symptoms of fibromyalgia. If you haven't already check out fibro
101 on the top of page one, you will find some good information for a fibromite.

All of us respond to medications differently. Research is showing that fibro pain is the
result of differences in the way the brain and spinal cord process and transmit pain.
People with fibro have higher levels of glutamate, a neurotransmitter that increases pain
transmission. They also have lower levels of norepinephrine and serotonin that reduce
pain level. A big advance in research was that substance P and nerve growth factor chemicals that increase pain transmission are 2-3 times higher in the spinal fluid of fibro
patients.

I take Savella(SNRI) 50 mgs 2xdaily and use cyclobenzaprine a muscle relaxer for flares.
It seems to be trial and error for all of us when looking for pain relief. The pain is never
really gone but the meds take the edge off.

When it comes to exercise, it is a must! You become more stiff and sore if you don't move,
Excercise also helps with stress and stress can add to pain. Pacing yourself is important.
Somedays I can walk 2-3 miles, other days I'm lucky to go a block or two, There is no
way that you know what you will be able to do the next day. Flares can come on for no
reason too. Most of my flares are either from stress, overdoing or weather.

Heat in any form is afibromites friend. I enjoy long soaks in a hot bath and most of us here
have a bed buddy or heating pad.

I'm into doing relaxation therapy on a daily basis. Deep breathing exercises, listening to
music and I have a massage pad. Keeping busy to distract pain really helps too.

Sorry I couldn't help with answering the question about Mucinex therapy.

Wishing you and you wife the best . Good luck to both of you!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 2/9/2010 1:27 PM (GMT -7)   
Hi, and welcome!  Gee, I'm sorry you have had problems with the medical community.  I did my homework, and always have, when it comes to chosing my medical doctor.  I use a board certified Internist who is also a diplomate.  He is right on top of the newest things to help with any problem I have.  He is also affiliated with a medical school in my area.  I have a teaching hospital close by that has been wonderful for other illnesses I have.  So, it is important to do your homework when chosing a physician and there are many fabulous doctors out there. 
 
Guaifenesin therapy hasn't helped many on this forum.  I remember some that tried it with no success but I do hope it helps your wife.
 
I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 to help with pain and fatigue.  Many with fibro are deficient in those vitamins and nutrients.  You will find links all about them in the Fibro 101 thread...the second thread on the forum. 
 
I'm also trying Co Q10.  I've been taking that for a few weeks and I do believe it is helping me.  But, I want to wait before I really talk about this.  The "jury" is still out. 
 
I do gentle exercises and stretching.  There are some good gentle stretching exercises in Fibro 101, too.  My gentle exercise is walking and also swimming.  These are good exercises for fibromites.  There is no way I could go to a gym, work my self up so I glistened with perspiration.  I wouldn't be able to move the next day!  Gentle exercises means just that....gentle!  We all do things that are more strenuous and generally pay for it with more pain for a while but I know I couldn't do strenuous exercises...especially daily.  But, if she is successful with the gentle exercises and isn't having so much pain and wants to try more, have her gradually work up to more strenuous exercise. 
 
Your wife needs to keep moving.  If you sit or lay too much, you will be stiff as a board with fibro.  Movement does help ease up the pain.  She also needs to pace herself.  She can't do what she used to in the same time frame.  I can still clean my house but I'll do a little, take a break, and then do a little more.  I usually break it up over a day or two. 
 
Moist heat is wonderful for pain, too.  Many here have Bed Buddies.  You can get these at Walgreen's and other places.  Or you can make one by taking a tube sock, filling it 2/3's full of raw long grain rice and tying a knot at the end.  Pop it in the microwave and it gives off moist heat!
 
Of course, eating healthy is good, no matter what illness you have.  Many find that if they eat too many carbs, they have more pain.  Caffeine can be a problem, too.  If she can have caffeine with no problems, she should stop eating or drinking anything with caffeine in it before 4 or 5 PM.  That's because sleep is very important for people with fibro.  We generally have problems getting into a REM sleep.  That's where or bodies start healing themselves.  She needs to get on a sleep schedule.  I'm generally in bed by 10 PM and am up by 6:30 AM.  I do wake up several times during the night but fall back to sleep easily. 
 
Your wife also needs to keep a good, positive attitude.  If she constantly thinks about pain, she will be in more misery.  I like to look at all the things that I can to instead of what I have problems doing.  I also look at the many blessings I have in my life.  This really has helped me a lot.
 
I have done the above and have had a full and enjoyable life in spite of fibromyalgia.  Your wife will need to keep searching to see what works best for her.  Unfortunately, what works for one doesn't necessarily work for another with this illness.  The doctors are now starting to think this is a neurological problem.  There is a link in Fibro 101 called Drs. Respond to New York Times Article.  You will see what learned doctors have to say about fibromyalgia.  These doctors have dedicated their lives to this illness. 
 
Encourage her to come on this forum.  We will try to answer her questions and help her by letting her know what works for us.  She needs to take an active part in her health and become her own advocate. 
 
I'm so glad you found us and joined in.  I hope to hear more from you and your wife soon!
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 2/9/2010 1:34:00 PM (GMT-7)


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 2/9/2010 4:15 PM (GMT -7)   
My friend was taking guaifenesin for a few years under Dr. Paul St. Armand. I remember her telling us how it increased her pain for a very long time at the beginning but I don't remember anything about fatigue. She believes the guaif helped but not a lot.

When taking quaifenesin for fibro, you have to avoid internal and external salicylates otherwise it doesn't work.

As far as how to tell how much exercise is enough, who knows? On some days, I can do an hour of intense (even for a healthy person) cardio and be fine afterward. Other days, I go 100 yards to get the mail and I'm down for the count. I can't tell ahead of time and there is no pattern that I've discovered. Fortunately for me, I have far more good days than bad now.

When I first started exercising, I found that many short bursts throughout the day worked better for me than one long session. By short, I mean less than 5 minutes maybe three times/day. I would add a few minutes onto one session at a time and eventually combined them. At the beginning, a few minutes of stretching throughout the day may be more than enough exercise.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 2/9/2010 6:35 PM (GMT -7)   
Dagger is absolutely correct.  When I started walking, I could only go about four houses down and had to come back.  The next day I could go a little further.  Now I start my day with a one mile walk with my dog.  I can walk far better now but I did have to break myself in to the exercise.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


antihero.zero
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/10/2010 7:01 AM (GMT -7)   
again...

Post Edited By Moderator (Chutz) : 2/10/2010 11:16:13 AM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 2/10/2010 10:04 AM (GMT -7)   
Quite frankly, I think you are reading too much.  Have you ever considered that what your trained doctors are telling you is true and what you are reading is false?  There are so many false thing reported these days.  There are plenty of off the wall techniques, too.
 
I've had Crohn's disease since I was a toddler.  It runs in my family.  My father's younger brother died of it when he was a child.  It was called regional eneritis back then.  I also have a first cousin from that side of the family with Crohn's too.
 
I was on antibiotics for 11 years but it didn't help my situation.  I ended up with my colon totally cobblestoned with ulcerations.  I had it removed.  Now, I haven't had a problem with ulcerations since.  So, to me, that shoots the heck out of your information.  If I had a MAP bacteria in my intestines, I'd still be suffering.  It would still be attacking my small intestines, but I'm just fine, thank you! 
 
Are you familiar with the differences between UC and Crohn's?  In UC the ulcerations don't go through the large intestines and start attacking other organs around that area.  With Crohn's the ulcerations will go completely through the intestines and start causing problems with other organs.  Also, UC stays in the colon.  Crohn's can affect both large and small intestines.  So, if the MAP bacteria is causing both problems, why do these two illnesses have different symptoms? 
 
I read what that article said and even the doctor said his treatment was controversial and I certainly agree with that.  You can also build up an immunity to antibiotics and then, when you need them to save your life, they don't work. 
 
So, I know for me that I will be sticking with what my doctor has to say.  I trust him, he is intelligent and open-minded, he respects my opinions, and I'm doing really well with the problems I have.  And, yes, I have many auto-iommune problems...including my hearing loss.  Auto immune illnesses do exist.
 
I hope I have clarified some things for you but, please, lets keep this forum about fibromyalgia.  Thanks!
 
I certainly hope you find a doctor that can help your wife with her fibromyalgia. 
 
Sherrine
 
 
 


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 2/10/2010 10:24:44 AM (GMT-7)


painjane
New Member


Date Joined Feb 2010
Total Posts : 1
   Posted 2/10/2010 10:23 AM (GMT -7)   
Hi, I am new here. You are so right about MD's. I was diagnosed about 25 years ago at age 35 and the Dr. handed me an RX. He gave me the name of my neck & shoulder pain and since he explained that there is no cure I threw the Rx away. Since then I have been learning how to deal with my FM without drugs.

We know that there is no cure, so the only thing we can do is try to feel as good as possible.

I'm at least 25 lbs overweight and my extra weight doesn't help my condition. I know that losing weight is the no. 1 priority.

I take supplements such as inositol powder for sleep (1//2 tsp 2x day), melatonin (1 mg.), Valerian, St. Johns Wort, tumeric capsules, licorice (15 drops 2x day), spirulina, Vit. D3 (sunshine is the best form), Cal-Mag in at least a 1:1, flaxseed, fresh lemons, healthy oils, garlic, ginger, etc. I read the comments here about sunflower oil/seeds and plan to add that to my diet.

I use a mini-trampoline (rebounder) and an exercise bike and free weights for exercise. The mini trampoline is a really good exercise and it's fun with music. On cold days like today, nothing is more helpful than a hot mineral salts bath.

The hardest therapy, but just as important, is reducing stress and setting up strict barriers. Everything that causes stress has got to go, whether it is noise or relationships. I always have earplugs handy and I also use good headphones with my iPod to block out everything I don't want to hear. If your cell phone causes you stress, don't use it. If we don't learn how to say "no" we'll always be a victim to the environment around us.

The last tip I want to share is the spirit of thankfulness, even through the difficulties. The thorn in the flesh is given for a reason.

antihero.zero
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/10/2010 10:32 AM (GMT -7)   
Antihero...

Again, this forum is for support and not to try to act as a medical professional giving advice nor for research. Please keep your post appropriate.

Chutz

Post Edited By Moderator (Chutz) : 2/10/2010 11:13:54 AM (GMT-7)


antihero.zero
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/10/2010 11:03 AM (GMT -7)   
Please keep posts on topic. This is not a research forum nor a place to insult people who are suffering from fibromyalgia...which you are not.

Chutz

Post Edited By Moderator (Chutz) : 2/10/2010 11:15:30 AM (GMT-7)

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