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Posted Today 8:11 AM (GMT 0)
Ok, I have been dealing with chronic pain for years and years. I am a 33 y/o male. I'm on about 20 meds and my pain conditions are the least controlled for several reasons. A month ago I went to see a rheumy about the possibility of rheumatism or something else in my joints and muscles. Here's the breakdown:

Osteoarthritis in both knees, hips, lower back and neck.
1 herniated and 2 degenerating discs in lower back. 2 degenerating discs in neck.
"fibrocystic changes" in hips (can't find any good info on that)
Tendon problems in both feet.
Moderate resting and post-exertion muscle pain in legs.
post exertion muscle pain everywhere else. Not the usual after exersize stuff. I know the difference.
Myofascial Pain from base of spine to base of neck radiating outward to entire back.
And of course severe fatigue and muscle weakness.
I also get this odd tingling in different places in my feet.

Recently this rheumy did a series of blood panels and a brief physical exam. He didn't seem to be too interested in what I had to say, though. after all was said and done he said I didn't have the myofascial or any autoimmune stuff, it was fibro. Now, my back (the whole thing, the lower obviously being the worst.) is the absolute worst. the arthritis pain being second. The other pain mostly comes with a little exertion.

The only thing that helps at all with the pain is narcotics. Different ones for different types of pain, too. For the neuropathy, percs or oxy. (high doses) For the rest, Lortab. That's it. I either can't take others or I've already tried them. I don't want narcs, in fact I came off oxy about 3 months ago. Not fun. Never again. I only use the Lortab when the pain gets intolerable. I'm talking with a neurosurgeon soon about DBS.

Anyway I'm just wondering about this fibro diagnosis. I know it's still a pretty contoversial disease and I'm considering seeking a second opinion. Or maybe I would be wasting my time. I don't know. I'm sure some of you have more experience with this than I do...
Posted Today 10:37 AM (GMT 0)
There's no contreversy. We know it's a virus related dysfunction that affects the Neurological parts of the human body. Those that don't accept the facts are totally ignorant of the problem...
It's always best to get a second opinion but in this area where too many are sceptical the chances of getting a correlation are smaller than if you had say lupus.
Best of luck and best wishes
Runckle
Posted Today 1:35 PM (GMT 0)

Is what we have a "virus related dysfunction that affects the Neurological parts of the human body"?  I would ask the Moderator to answer this question.

Oxyegne

Love to all those suffering from fibro

Posted Today 1:48 PM (GMT 0)
If it helps to put your mind at ease, I would say get a second opinion from a board certified rheumatologist who treats many patients with fibro (you can call the office and ask if he/she treats patients with fibro). I saw three different rheumatologists, and all 3 diagnosed me with fibro. A good rheumy who is familiar with fibro should be able to give you an accurate diagnosis. Even though fibro appears now to be a neurological problem, it is usually treated by a rheumatologist or a good internist/family doctor. Some people on this forum have also tried pain clinics, but I don't have experience with that myself.

Here is a good article from The Mayo Clinic (my favorite medical site that I'm always quoting from, lol) about fibro:

http://www.mayoclinic.com/health/fibromyalgia/DS00079

The current research shows that fibro is a central nervous system pain processing problem. No one knows for sure what triggers it, but some research shows that prior pain or trauma ( like surgery or an accident) can be a precursor. It wouldn't surprise me if all of your back pain and arthritis may have been a contributing factor. I have had 2 back surgeries for ruptured discs, and I developed fibro shortly after my second one. I also have arthritis in my back/neck and sacroiliitis in my hips. Fibro can definitely coexist with all of your back and joint problems.

I'm sorry you are dealing with so much pain. I can definitely relate to the back, neck, and joint problems. Add fibro to the mix, and it can be really hard to cope with. I hope you get some relief, and I hope you find some peace about your diagnosis.

Hugs - Austen
Posted Today 4:52 PM (GMT 0)
Thanks, all, I will go about seeking a second opinion. I probably should have said it, but lupus was ruled out already. gracias a Dios.

anyway I have always personally considered fibro a bit of a wastebasket diagnosis, as in the docs saying, "I don't know what's wrong, I'm just going to call it Fibromyaligia and call it good." I would never want ti invalidate a persons suffering, it's just a personal bias that now I'm faced with possibly having to change. Ironic.

anyway If the second rheumy confirms it, I'm good. I also see a neuro on an unrelated issue next week and I'll see what he thinks.

again, Thanks.
Posted Today 5:24 PM (GMT 0)
I was diagnosed with fibro two years ago. But now I am considering there being something else going on. I understand where you are coming from. I am on a lot of different medications, and I wish I wasn't. Lortabs or any kind of narcotic are the only things that help with my pain. Ibuprophen doesn't help. Straight tylenol doesn't help. I know where you are at. If you feel like you need a second opinion, then get one. It's your body. You have the right to see if there are other answers out there, something that can be changed. Good luck. Let us know how things go.
Posted Today 6:19 PM (GMT 0)

sdjeff1 said...
Thanks, all, I will go about seeking a second opinion. I probably should have said it, but lupus was ruled out already. gracias a Dios.

anyway I have always personally considered fibro a bit of a wastebasket diagnosis, as in the docs saying, "I don't know what's wrong, I'm just going to call it Fibromyaligia and call it good." I would never want ti invalidate a persons suffering, it's just a personal bias that now I'm faced with possibly having to change. Ironic.

anyway If the second rheumy confirms it, I'm good. I also see a neuro on an unrelated issue next week and I'll see what he thinks.

again,thanks

I too considered it the same way. Years ago i was told I might have it but dismissed it because at the time it was considered "the illness that you had if nothing else fit". After a lot of research and reading on here, I know better. I was dx officially on nov 4 of this year. So many of the symptoms fit. Get as many opinions as you feel you need. It feels good to me to be able to say Yes, I have a disease and this is what it is called. Some still do not get it. My dtr is having a hard time saying that i actually have something wrong though she has seen me in pain for most of her life and she is 24. Good luck.

 

Posted Today 10:30 PM (GMT 0)
Runcke, nope, I'm not ignorant of the facts.  The fact is that doctors don't know what is causing this illness but they believe it is a neurological illness.  I have been reading and studying for decades about this illness and there is no proof that it is caused by a virus.  So please don't infer that we are ignorant about the cause of fibro.

 

sdjeff, saying that fibro is a wastebasket diagnosis is inaccurate.  Fibromyalgia is a true illness and one that is recognized by the National Institute of Health, the American College of Rheumatology, the American Medical Association, and the World Health Organization to name a few.  There is no controversy that this is a true illness...not a wastebasket illness.  Of course, there are some doctors still in the Dark Ages.  Be sure to check out Fibro 101...the first thread on the forum.  You will find links all about fibro and will learn a lot there.  Knowledge is power!

 

Here is a link from Fibro 101 that has statements from learned doctors that have been studying this illness for years.  I think I will listen to them.  Hope this helps both of you.

 

http://www.fmnetnews.com/basics-news-archives-respond.php

 

Sherrine

 

Posted 12/3/2010 6:04 AM (GMT 0)
Sherrine,

To write that my post was hurtful and inaccurate was quite a slap in the face. I'm here for support, not that.

I only felt it was a wastebasket diagnosis due to literature I've read from both sides of the argument. As well as opinions from several current and past internists and specialists I have had. HOWEVER experiencing something and knowing the very vague and contradictory mechanics of an illness are two completely different things.

I AM NOT MINIMIZING ANYONES SUFFERING. I was just merely expressing my opinion which I also clearly stated is subject to change. Pain is pain and fibro or not we all suffer. A lot.

So, next time please read posts a little more carefully before attacking someone.

Good day,

Jeff
Posted 12/3/2010 4:07 PM (GMT 0)
sdjeff, I'm sorry.  My son is visiting me at the moment, the first time I've seen him in a year, and I'm trying to be ten places at one time.  I wrote that post quickly AND I did edit it but apparently it didn't go through.  I didn't want to "attack" you.  My edited version stated, "saying that fibro is a wastebasket diagnosis is inaccurate."  If that stupid edit had gone through, you wouldn't have been offended.  I was just giving you information and showing you that it isn't a wastebasket diagnosis. 

The fault lies with me.  I read your post quickly and when I saw "wastebasket"  I typed hastily and then corrected myself...at least I thought it went through.  So I am sorry.  I've been having problems with the site lately...not sure if it's my computer or the site.

 

By the way, I made the edit, AGAIN, in my other post so it reads the way I wanted it to read.  I think you will see that I wasn't trying to offend anyone.  It's hard to express things sometimes when you can't see the emotions in communications.

Sherrine 

Posted 12/3/2010 4:44 PM (GMT 0)
Sherrine

that's true. It's pretty difficult to get an emotional context with just text. It's cool. I know I'm a little raw from all the pain going on as well as other things. I take 21 meds for this and that. My pain is the most under treated condition I have cause I refuse to use narcotics again and I've tried everything else.

So no worries between us. I can see you work hard to moderate these forums and it looks like your life is a bit crazy right now.

I guess the reason I still think the way I do about fibro is that I dig through the really deep stuff. The studies, meta-studies, articles, treatises, textbooks and so on and so forth. 3 of my docs joke that I knew more than they did going into med school. I have some thought and memory issues but I can analyze, interpret and memorize with the best of them as long as it's written down. Anyway there are so many good convincing arguments on both sides of the issue it can be quite confusing.

Anyway, I'll get my second opinion and go from there. The only reservation I have about the diagnosis really is the fact that my back hurts more than anything else. I do have disc issues and osteoarthritis there but it's all in my lower back. the whole thing from stem to stern, shoulder to shoulder hurts like mad 24/7. the rest isn't quite that bad but still bad.

Hope you have a good time with your son.
Posted 12/3/2010 5:23 PM (GMT 0)
Thanks for understanding.  You could have something else going on along with fibro.  My back and shoulders hurt all of the time.  I used to have terrible lower back pain but once I learned how to get in and out of bed and in and out of the car correctly, I rarely have low back pain.  Below is what I do.

 

First of all, I do not sleep flat on my back because it makes my back hurt more.  I don't sleep on my stomach either.  I sleep on my sides with a pillow wedged behind my back.  This way, I can partially be on my back but have support.  That helps me.  I also get out of bed using a cane.  I roll on my side, draw my legs up in a sitting position so the legs are actually hanging over the floor, and then I push off with the cane.  Gravity will bring your legs down and you will be pulled to a sitting position without using your back muscles.

 

When getting in and out of a car, sit on the seat with your feet on the pavement.  Then, either using the seat or the steering wheel, swivel your feet into the car while keeping your back straight.  I buy cars with leather seats because they are slippery.  But, when I rent a car and get cloth seats I had to come up with another idea...and I did!  I get a garbage bag and a towel.  I lay the garbage bag on the seat and the towel over it.  Then I do the above.  The garbage bag and towel let  your rear end swivel like you were on a lazy susan!  LOL  Just reverse the above to get out of the car.

 

Don't use your back muscles when you are lifting things up.  Use your legs instead.  By doing the above things, my back rarely hurts me now.  I hope these suggestions will help you, too!

I won't take narcotics, either.  I do use vitamin D3 and malic acid/magnesium supplements and these really have helped me a lot.  If you haven't had a chance, read Fibro 101...the first thread on the forum.  There are links to good info about fibro...and info about these vitamins and supplements and how they work in the body.  This might help you, too.

Also, you need to keep moving with this illness.  If you sit or lay too much, you will be stiff as a board and have more pain.  There are some gentle stretching exercises on Fibro 101 that help and also gentle exercises like walking and swimming really do help.  I don't feel like exercising but always feel better and have more energy after I do.

I hope you find what will help you control your pain.  You can have a full and enjoyable life in spite of this illness.  I know because I have.  Keep a good positive outlook and look forward to each day.  It could be a really good one!

Sherrine
Posted 12/3/2010 5:49 PM (GMT 0)
sdjeff,

Most of my pain is in my back, too. I have some DD disease and sciatica stuff going on, and I also caught my back on fire when I was 13 and got 3rd degree burns. If my back was normal, I could easily live with the other Fibro stuff. No matter what part of my body I "misuse" (and often, I can't even believe I've overdone it!) it affects my back - mostly left side, bottom to top. So I can relate. I've also found that the only thing that helps is narcotics and I hate that. I don't take them all the time, but more each year.

Debbie
Posted 12/3/2010 7:42 PM (GMT 0)
Thanks.

When I lift I can't really use my legs much cause of my arthritis and hip issues. I need a new left knee for sure but I've been told I won't be able to practice martial arts if I get the replacement. Not that I use my legs all that much, I've always placed more emphasis on upper body stuff and I'm not very flexible. I walk with a cane when I'm out most of the time. Being as "young" as I am I get nasy looks when I use thise scooters in the stores. Oh well, screw 'em.

I definitely get out of the car the way you describe. But my seats are leather so I slip right out. I'll be sad when I sell that car in the spring. I glazed over the fibro 101 stuff and I'll delve deeper when I get the chance. I'm also gonna start the supplements. Good to know and I'll try almost anything at this point.

I see a neurosurgeon on the 7th about DBS for my pain. I just don't care if I get my skull drilled and have stuff put in it. Fine by me. I just hope Medicare and Medicaid approve it.
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