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confused Okie
Regular Member

Date Joined Apr 2009
Total Posts : 164
   Posted 4/8/2009 8:21 PM (GMT -6)   
smhair  Hi, first time on. I'm really confused about my dx. I was dx with fibro 14 yrs ago. Have gotten worse over the years. It started in my sacram, low back and down the outside of both legs, on to the inside of both legs and then crawled up my back. Calves get so sore it's scary to sit down and think about bumbing them on a chair and for gods sake no one touch me. Shoulders were next and then elbows. After that it was my heels.Muscles in neck are like rocks. I can't sit, stand, lay down or walk without pain. It consumes my life. Podiatrist tested blood and said I was HLA-B27 positive and possible ankylosing spondylitis. I had injections in my heels that eventually quit working so I had surgery, which also hasn't helped. I have read that AS goes along with fibro. I have been told all of these:
2.osteo arthritis
6.plantar fascitis
7.gangloid cysts? I think thats what she said
9.facet syndrome
I can't think of any more right now. Is this the normal path, does everyone deal with this? I do have all the symptoms of AS and all the trigger points for fibro and chronic fatigue. What kind of medications is helping if any? What kind of Dr. is best?

Post Edited (confused Okie) : 4/8/2009 7:28:17 PM (GMT-6)

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 4/9/2009 10:50 AM (GMT -6)   
Hi Confused and welcome!!

I sure can understand why you are confused...what a load for you to carry! I'm so sorry but the good news is the people here are a wonderful group for support and compassion.

First a few questions...what kind of doctor(s) have diagnosed your conditions? For me my primary doc treats most everything but he did send me to specialists to confirm many of the conditions and lets them treat things he doesn't feel he's best at. Works well for me. As you will also find out, most of us have multiple conditions to deal with. Part of that is the nature of fibro and part is unknown. If the medical community knew what cased fibro then we'd have a better chance at learning why we have all of these other problems and could start on a path to a cure. But sad to say, we're not "popular" enough to get many research dollars. After's just pain, right?? NOT! It destroys lives, careers and families. doesn't have to and that's why we are help each other learn how to live a good life in spite of fibro.

I take quite a bit of medication but what helps my pain the most are narcotic pain meds. I also take Provigil to help with the fatigue and grogginess the medication causes. Some of the literature says that narcotic pain meds don't work, or are not appropriate, for fibro but there are thousands of us that prove that wrong every day. Without it I would have no life at all. You may need to search for a doctor who understands and is not afraid to treat your fibromyalgia.

Please take a few minutes and read Fibro 101 at the top of the forum page. There is tons of good information there from gentle exercises to OTC treatments. Please keep in touch and keep asking questions. It helps us all!

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."

confused Okie
Regular Member

Date Joined Apr 2009
Total Posts : 164
   Posted 4/9/2009 11:36 AM (GMT -6)   
Thanks, it is nice to find others who are going through this. Iv' been to alot of different doctors. Family practice said fibro, orthapedic said nothing is wrong, podiatriist said paobable ankylosing spondylitis, Rhuemy said fibro and sleep disorder, pain specialist said fibro and probable ankylosing spondylosis. Others too but basically the same dx's. I am going to rhuemy that podiatrist set me up with. It's 65 miles and in another state. I figure he has probably sent other plantar fascitis patients to him so maybe he can settle this. I really don't care what they call it, I just want some relief from pain. It doesn't have to be pain med but that is all that I have had that actually helped. I would hate to list all the meds I have tried. Some twice.
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.

Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 4/9/2009 2:59 PM (GMT -6)   

Hey there Oakie!!

Welcome to the forum!!!  You've found the best place to find support and learn more about fibro.. sounds like you've had a lot of experience with it  already.

I have never heard of ankylosing spondylosis so I looked it up.  No one that I know of on the forum has it .. but I can't be sure of that.

I do have experience with many of your other problems, though.  Plantar fascitis, which I was told is like carpel tunnel of the feet.  I have that and it's awful.  If you sit or stand for too long it really hurts.  My feet and toes cramp up all of the time.  My son has it too.  Main thing you can do for it is insoles.. but you know that.

A lot of our members share many of your problems.. most of them sound like  they're fibro related.  I wish we had something that could really make us feel better.. but alas.. there's not much.  Lots of meds, some natural things (mentioned on fibro 101), stretches and gentle exercise seem to be about the only things that the medical industry has come up with so far.

Anyway.. glad you found us!!  I hope you'll continue to post and join us often!!

Take care,

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

confused Okie
Regular Member

Date Joined Apr 2009
Total Posts : 164
   Posted 4/9/2009 10:53 PM (GMT -6)   
Yeah, lots of good info here. I love the compasion everyone has. I don't have anyone that totally understands. "Normal" people will only listen for a while before they think your'e nuts. My husband is great, but I think someone has to experience this before they understand. I have sort of become emotionless, like pain is all I feel. I didn't talk to doc, figured he would send me to a shrink. Im not crazy, I just hurt. My pain hasn't let up in over a year so I guess I'm a little bitter. Feeling a little better emotionaly, hope the rhuemy can help.
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.

Veteran Member

Date Joined Jun 2008
Total Posts : 1279
   Posted 4/10/2009 12:11 PM (GMT -6)   

A-w-w-w Okie, you have plenty going on, and the relentless pain! This winter just about did me in with the pain it caused. The milder temps seem to be helping a little now. So many of us have a laundry list of other things going on lots of the same issues in common. My neck and shoulders muscles always feel like rocks and give me the worst pain. Have you tried the rice neck wraps (you can use them anywhere on your body that hurts) that you put in the microwave to heat? I take warm/hot baths, Tylenol 4,000mg a day and Darvocet for back up. I know I could have better pain management and I am working on that. Supposed to start Lyrica, but chicken to start because I am so sensitive to medications.

I also see my regular Dr. for my fibro. The rheumy that diagnosed me I was not impressed with. I felt SO rushed, and I KNEW I was just a number to him. My regular MD is just the opposite. I hope your appt. goes well and that you can start to get some of this pain under control. 

Having a good support system makes a huge difference in how I feel also- A good Dr., family, friends and the group here. Everyone else in my life can be there for me but they do not know exactly what I go through- here they do!!  

Anyways a warm Welcome and it was nice to meet you!


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

Forum Moderator

Date Joined Apr 2005
Total Posts : 17061
   Posted 4/10/2009 12:31 PM (GMT -6)   
Hi, confused, and welcome!  I had plantar faciitis and started wearing Birkenstock shoes and it went away.  It took months but every month was a little bit better.  Now my feet don't hurt at all and I can even walk barefooted now.  I also told a friend about Birkenstocks because she had plantar faciitis too.  She tried them and her feet are fine now.  It might be worth a try. 
Many people use a rheumatologist for their fibromyalgia.  I use a board certified Internist.  No matter what type of doctor you use, it is imperative that they believe in fibro and will help.
I use ibuprofen with food and extra strength Tylenol for pain.  I also take malic acid/magnesium supplements and vitamin D and that helps with pain and fatigue. 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibromyalgia that will help you and you will learn a lot.
I'm so glad that you found us and joined in.  I hope to hear more from  you soon.
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

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