Rheumatologist/Pain/Tired/Will Fibromyalgia ever go away or will it stay with me until I die?

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Stari
Regular Member


Date Joined Mar 2009
Total Posts : 235
   Posted 4/11/2009 5:25 PM (GMT -6)   
Should a person who has a diagnoisive of fibromyaligia see a rheumatologist.  My doctor has me on thyroid cream, skelaxin,magnesium oxide, darvocet, trazodone, and zoloft...On my own I have been taking guaifenesin.
 
Ok when I read back that is alot of meds to take when you add on adderal and advair...
 
shakehead   redface eyes devil ...............group hug rolleyes cool :-) nono

Statgeek
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Date Joined Jul 2008
Total Posts : 1495
   Posted 4/11/2009 11:07 PM (GMT -6)   
I don't know Stari. At Kaiser the rheumys do not treat fibro, the pain doc does. Check with your doc and see what he/she recommends. I have no idea what guaifensin is, but you should provably check with your doc on that too.
Hope you have a good weekend,
Sue

Chutz
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Date Joined Jan 2005
Total Posts : 9090
   Posted 4/12/2009 12:18 AM (GMT -6)   
Hi Stari!

Nice to meet you!! You will find that folks with fibro are treated by different doctors. I would guess the majority are treated either by their primary or a pain management doctor. A few are treated by their rheumy. I was sent to a rheumy for conformation of fibro and then my primary took over. He works hard learning everything new he can on chronic pain to help his patients.

Just a couple of thoughts...make sure your doc knows about your OTC medications. They can seem very benign yet may interfere with your prescriptions meds. You could also talk to your pharmacist about it too. The amount of medications doesn't see too outrageous but 20 years ago I would have thought differently. I take a pile of pills each day along with insulin to stay alive. I hate it and love it...just how it is.

And to your title question...at this point No, your fibro will never go away. It's for life. BUT, my personal hope is that someone who is "famous" or has come sort of clout will get fibro. Then we may see more research dollars flow into the system and get closer to a cure. Sad but it seems to sort of work that way.

Keep in touch and let us know how you're doing...OK?
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
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tyno3
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Date Joined May 2008
Total Posts : 1081
   Posted 4/12/2009 6:41 AM (GMT -6)   
Hi Stari; Welcome; I was dx'd 15 yrs. ago. It's an up and down battle. it is hard to carry on a "normal' life, for me, anyway, as it keeps popping up at inconvenient times. For example, my son and I were in town a couple weeks back. I let him drive when I feel real bad or have meds in me. So, we did a couple of errands and I suggested we go for a little drive out a different way, someplace I haven't been in years. but, we had to "gas up". By the time the gas was in the truck and I paid and was back in the truck, I told my son "take me home". Just that simple action of walking in to gas station and paying for gas, took all the wind out of my sails. I needed to lie down, and it wasn't the price of gas that knocked me down, I don't think, lol. I have read, 'pace yourself", it's the key to survival with this dd.

Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.


pattipanda
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Date Joined Jan 2009
Total Posts : 1014
   Posted 4/12/2009 10:17 AM (GMT -6)   

Hey Stari,

I don't use a rheumetologist, I go to my GP for my fibro needs.  I'm very pleased with the way he's handling it.  Not too much medicine. (listed below).  I don't recommend taking anything on your own w/o Dr's approval, because you never know if the interaction could counteract the meds you're being prescribed.  Just my thoughts on it.

Take care,


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


Marlee2
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Date Joined Aug 2007
Total Posts : 6067
   Posted 4/12/2009 10:43 AM (GMT -6)   
Hi Stari, I keep my GP updated on everything that is going on with my fibro but I go to a rheumy too. I may be changing rheumies cause my DIL found one that seems to be more up to date on fibro than the one I'm going to and I will go to whoever I feel has the most knowledge.
 
I'm like Chutzie, if someone famous was to be dxd with fibro it would be in the headlines. Not that I want someone like Oprah to get it but can you imagine how much someone like her would do for fibro??? I have hope that they will get to the bottom of the cause of fibro and better meds will come out all the time.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


jewelrylady
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Date Joined Jun 2008
Total Posts : 672
   Posted 4/12/2009 1:06 PM (GMT -6)   
Stari, I use my GP & have always tried to keep everything with her with regards to my Fibro, she is very up on Fibro. Since she is on maternity leave I am now seeing another Dr in the clinic & am very happy to say she is also very knowledgeable about Fibro. I did go to a Rheumy for the dx of my CFS but only the one time & said I wanted my GP to oversee it. I ended up last year in a total mess of doctors & will not do that again.

Ladies, if someone famous had Fibro we would certainly see a big change, wouldn't we? But like you said, I could not wish this on anyone either. I sat here & thought about Oprah with Fibro & thought about the publicity & all the attention to it & then I felt really guilty for even thinking something like that.

Hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety  Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 4/12/2009 1:22 PM (GMT -6)   
As far as Doctors go, I use what I can. I have no insurance, pay for my own meds and happened to find a good, understanding GP that was willing to write the scripts that help without thinking I am a Hypochondriac. Two years ago, I was on the Arizona funded program for low or no income, and was stuck with a Physicians Assistant for two years that couldn't write all the scripts, ran ever test in the world and found nothing of course that would explain anything, and I had to go to County Mental Health for my anti-depressents and anti-anxiety meds, and all they did was keep filling prescriptions and writing down on my file, Mood Disorder, Mood Disorder, Mood Disorder about 20 times in two years. So, I guess I don't really have Fibro, I have a mood disorder and can't manage to get my head out of my pants well enough to pull it back together again. Idiots!

Personally, I think what I am going to do, since I had Polio as a child is just go ahead and file for disability and blow it through if I have to go to a hearing in a wheelchair. and then at least I will have Medicare after a year and maybe I can get a real Doctor that knows something.

As far as which type of Doctor you should use, its the one that you can find that knows the most, treats you like a real patient instead of a head case and can address your needs the best. What letters they have on their title doesn't seem to mean nearly as much.

You may want to drop the Guafenesin which is a expectorant, unless you have a problem getting mucus up out of your lungs, which might be your case if your taking the Guafenesin for breathing, reading that you are using drugs for breathing. I don't know if you have asthma, or diagnosed with some other lung problem, but Fibro by itself can cause a sense of breathing problems. I have scripts for a couple of meds to open up my breathing, and most of the time it is not even my lungs causing the problem.

If your following the Guafenesin protocol for Fibro, that Doctor, can't think of his name at the moment, that claimed that Fibro was the result of a big build of sulfates and other crud in the muscles and he claimed that Guafenesin would over time break this stuff down, you are adding another drug that makes you feel kinda lousy for a minimal effect and it could be interacting with your other meds. It simply depends on what your taking the Guafenesin for. I take it every once in awhile for congestion myself.

This Guafenesin protocol for Fibro became very popular years ago when there was little else to help. Some of the people that did it felt somewhat better and some got nothing out of it. The reason some felt better is that if you break down what Guafenesin is beyond breaking up mucus, it is very similar chemically to both aspirin and Robaxin, a pain killer, anti-inflammatory, and muscle relaxer all combined in one pill. The people using this Protocol were working themselves up to very high dosages of Guafenesin, so they were feeling somewhat better because they were getting the same thing essentially, as if they were taking high dosages of aspirin and a high dose muscle relaxer.

Will you have it the rest of your life? Hmmm, I am 51 and still holding out hope, but getting to the point that age fatigue, memory not working as well as it used to, more aches and pains added on top of the Fibro that hope is slowly fading and if they did get some real help for this, by the time they do I will be about ready for my recliner and TV anyhow. The younger you are, I would say more years probably equals more time for them to get around to fixing it, or get better drugs that address it. So, I wouldn't say for sure your going to have it your whole life or not. Hang onto hope and in the meantime all you can do is learn to deal with it the best you can.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.

Post Edited (Grailhunter) : 4/12/2009 12:57:27 PM (GMT-6)


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 4/12/2009 2:12 PM (GMT -6)   
I personally feel that mood disorders and Fibro overlap on some plane, as does, hypothyroidism and fibro. Also, I believe there is a cumulative effect of having Fibro for more years. I personally think my muscles and injuries don't heal adequately, or in any "normal"time span. I spent six months limping from a sprained knee and if I move the wrong way, or it sinks lower than my other knee I feel the jolt of pain, just like when I first injured it. Now it is my left arm. This torn muscle or whatever it is, has been going on for four months. I feel gradual improvement at the cost of many ungents and heat wraps, and then I'll have to swerve the truck a bit to miss a pothole and there's that same acute pain like the day after I strained/tore, or whatever, I did to it.

Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 4/12/2009 2:30 PM (GMT -6)   
Mood disorders and Fibro do overlap for sure. Problem is, when your stuck with County Mental Health, they don't want to address anything except their specialty, mood disorder. It took me two years to finally get the Psychiatric Physicians Assistant I was seeing to understand that you cannot separate the physical from the mental and if you can just acknowledge this concept that their is a whole lot more going on then you treating my brain, my frustration level with this place will go way down. I was already frustrated enough with the Physicians Assistant I was going to on the physical part, that because he could not find anything in a blood test or CT scan, he figured it was mental also. This is a literal quote from him. "If you had a good Psychiatrist you would get well". I told the Psychiatrist what he said. The Shrink responded, "If you had a good Doctor you would get well".

That is where we are at right now with most of these Doctors, and that's why the only advice I can give on what Doctor to get, is if you can find one that believes Fibro and I will add, Chronic Fatigue exist, is a real disease or disorder, treats it, and treats you well, and helps you the most, that is the one you need. The heck with what particular specialist credentials they might have. If you can find that kind of Doctor, your doing good.

And I understand the takes a long time to heal thing Tyno. It took me right around 10 years go get the daily, intense chronic pain out of my neck and jaw. Two years of stretching exercises and heat and therapy to get my ribs and sternum from stabbing, aching, someone is putting a sword through my chest and its coming out my back, down to a level of just nags at me on most days. 3 years to go from feeling like I am suffocating much of the time to feeling a fatigued out shortness of breath part of the day. 4 years for my stomach and intestines to go from intense pain to sometimes I just feel like they are going to come up and out and dump on the floor. Pretty sight.

It stinks and unfortunately, long ago they tagged this long list of symptoms as caused by psychological somatic disorders. And we are still fighting it, because most Doctors refuse to educate themselves on what the top researchers and Doctors are saying about this.

I think, what it may actually take is a drug, FDA approved that is specific for treating Fibromyalgia. Now its at the point where we have Gabapentin, Lyrica, Cymbalta, all approved for neuropathy, basically nerve pain. Its part way there. Now we go in and say I think I have Fibro pain, and they may not believe in it, but there are some scripts they can write you, so okay, here you go. If they can get a strong enough case at the top to push for the creation of drugs that are effective against Fibromyalgia, and specific to it, the whole mind set of most of these Doctors will change. I think that is their main problem. They don't want to believe it, because they can't effectively treat it by writing a script specifically for it. Most of what these Doctors do is run test and then push the drugs the drug companies tell them to push.

Most of the Doctors I have seen, I feel like I took my car to a Jiffy Lube and they tell you they checked 65 different things and you drive out and it rains and your wind shield wipers fall off.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.

Post Edited (Grailhunter) : 4/12/2009 2:26:28 PM (GMT-6)


Stari
Regular Member


Date Joined Mar 2009
Total Posts : 235
   Posted 4/12/2009 5:14 PM (GMT -6)   
Thank you very much for your replies! I am very happy I find this forum :) It is nice to know others who are in pain and are living life in pain. I think it is hard for others who don't have this syndrome to know what it is like for those of us who have it. Something about if you don't see a broken bone, scratch...or blood it doesn't hurt.

GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 4/13/2009 8:39 AM (GMT -6)   

Hi Stari and Welcome!

I was diagnosed by a rheumy but see my regular Dr. now for the fibro. She is very thorough and knows alot about fibro. The rheumy I saw, I was not impressed with- he could have cared less- I was just a number.

I got fibro about a year ago now and I thought my life was over. A good Dr., the group here, my family and friends support, Physical Therapy, got on an anti-depressant, and I am living my life again. The things that affect me yet are my finances (not able to work) and if my pain/fatigue gets off the charts.

Like the others stated, let your Dr. know what you are taking on your own. I was taking Vit. B-12 on my own and my Dr. did bloodwork and I had too much in my system which can become toxic. Instead of taking it everyday, I take it 3 times a week now.

Nice to meet you!

GamJill 

 

  

 


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  

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