HealingWell
Search Close Search
☰

Hello everyone (newbie)

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/30/2010 5:56 PM (GMT 0)
I guess I'm not technically a newbie, because I have posted on the Crohn's board before, but this is my first time posting on the Fibro board.  My name is Sheryl, I'm 44, with Crohn's disease, two bulging disks in my lower back, and unexplained leg pain.

On my internist's recommendation, I visited a rheum doc.  He reported back that I was severely low on Vitamin D, so I'm taking D3 now.  He also ordered an MRI for my legs, which didn't result in knowing much of anything.  He said I have "unexplained inflammation of the legs." Huh?!  about 10 months ago my legs really started hurting, I mean it hurt to even put a pair of pants on.  I wrote it off to the back issue, but then it just got to be too much.  I wear a Fentanyl pain patch for my back pain, but it doesn't touch the pain in the legs - which completely puzzles me.

So, I start reading up and talking to co-workers and family members with fibro.  My symptoms seems to line up with it.  I have been cleared on all the arthritis bloodwork, even though I take Humira injections for arthritis pain caused by the Crohn's.  Are you confused yet?  I know I am.

I have a few questions if someone doesn't mind helping me out.

  • Is fibro an auto-immune disorder?
  • The pain has spread to the bottoms of the feet - the soles hurt so bad in the mornings I can barely walk on them. Anyone have that?
  • How is it diagnosed? Is there a conclusive test?
  • Why does it seem that some docs still "poo-poo" the disease?

I sure do appreciate ya'll reading this very long post.  I would appreciate some help if anyone feels so inclined....thank you!

Sheryl

Humira injections 1x week
Celebrex
Paxil
Abilify
Nortriptyline
Lithium Carbonate (yeah, I'm bipolar to add to the fun)
Fentanyl pain patch (100 mg/every 3 day)
Synthriod (for underactive thyroid)


Posted 7/30/2010 6:24 PM (GMT 0)
Hi Sheryl and welcome to the Fibro boards.

I am not the expert on this by any means and all of us have different symptons going on at different times.
At the top of the board there is a Link called Fibro 101 and it's got a huge amount of great information. Thanks to Sherrine for putting this together, it's been a big help to me.

A couple of your questions:

No, it's not an autoimmune.
As far as the pain in the feet, I do have that going on pretty often and I know I have hear of others with that symptom as well.
No, conclusive test, although their is a "tender point" test that is used in general to help with the diagnosis. Sometimes it's tough because there are days that every one of those "tender points" are really blazing and on good days, although the pain is still there, it's not so bad. ( makes me doubt my diagnosis until 10 minutes later when I'm racked with pain again)

There will be others coming along soon to answer questions and point you in the right direction. Your doctor is a very important part of your diagnosis and care. Make sure you have one that believes in fibro or you will never get any answers.

Again, Welcome and I hope you find some comfort soon.
Steph
Posted 7/30/2010 7:08 PM (GMT 0)
Hi Sheryl and Welcome, to the land of friendly fibromites. I'm sorry you are hurting,
Fibro is not really an inflammatory disorder although it certainly feels like it. Fibro
does share many symptoms of connective tissue diseases and that is why bloodwork
is done first to rule out CTD's.

The two main symptoms of fibro are pain and fatigue. The causes of fibro are unknown, although there are many theories floating around. There are currently no
diagnostic lab tests for fibro. Usually people with fibro have wide spread pain on all
four quandrants of their body...above and below the waist. There are 18 designated
places on the body called triiger or tender points and these are checked for tender-
ness. Like Minnie said " of us have differant symptoms going on at differant times."

I think many doctors are not familiar with fibro and that is why it is so important
that you see someone who is. I see a wonderful rheumy who is familiar with fibro
and th CTD's, On Fibro 101 check out the link...What else could it be. The fibro 101
thread is a great resource so be sure to check it out...page 1, 1st thread.

Post often with as many questions or concerns you have...We Care!

Hugs, Robin
Posted 7/30/2010 7:41 PM (GMT 0)
Hi, Sheryl,

I thought that the jury was still out on whether or not it's autoimmune.? It is frustrating how some doctors still treat us like we're just trying to get attention (what some people won't do....) because nothing shows up on a test. I guess they are finding some things that are different with our brains, (don't ask me what, specifically, but something about how we process pain) and we tend to have low serotonin levels and high Substance P (for pain!) levels. Beyond that, I can't remember much of what I read. That's another wonderful trait we share - the foggy, foggy brain.

Sorry about your heel pain and all the rest of it. We are a caring group here so hope you can get some help.

Achey
Posted 7/30/2010 8:07 PM (GMT 0)
Hi Sheryl, welcome to our fibro family, There is no blood test or lab work that can definitely diagnose fibro. Usually they do a trigger point test on your body and if you have 11 of the 18 sore spots thats how they diagnose it. I think that is why alot of drs. still dont believe in fibro because it is so hard to diagnose. Luckily I no longer have the foot pain that I used too but I do understand how painful it can be. One thing with fibro is that it doesnt seem to stay in one place all the time. It seems like you get used to it in one area then it will move on to another and that is one of the frustrating things about this disease. Another thing with most of us is that some medicines will work for us but not for others. You have to keep trying different ones to find what works for you. I know that myself I use 25mcg fentanyl patches and it helps relieve some of my pain. I can usually make one patch last from a week to two weeks. I have had fibro for a very long time though so my pain tolerance is higher now. Once again welcome and this is a great place to be. We have so many caring people here.
Gentle Hugs

Shirley
Posted 7/30/2010 10:13 PM (GMT 0)
Hi, Sheryl, and welcome!  You have gotten some great help already and most of  your questions answered.  I, too, have Crohn's and a little of the arthritis that goes along with it.  But not a lot.  I'm very fortunate. 

Doctors say fibro is not an auto-immune illness but most everything else I have is auto-immune!  I find that to be a little bit strange.

 

Perhaps the foot pain is plantar faciitis.  I had that.  It was mainly in my heels and when I put my feet down on the floor, it felt like someone was driving a stake through my heel.  I changed to Birkenstock shoes and that took care of the problem for me.  I've also had other foot pain and toe pain that has lasted for months and then disappear!  Never found out why so I think it probably was fibro.

 

There is no conclusive test for fibro.  They rule out other illness first and do a tender point test.  That's about it. 

 

Doctors poo-poo this because they can't find what is causing this and it happens to women more than men.  So, for years it was far easier to say it was all in your head.  Well, they are finding  out how wrong they were.  In Fibro 101, the first thread on the forum, there is a link called Doctors Respond to New York Times Article.  You will find that very interesting!

 

Many with fibro seem to be deficient in vitamin D.  I take 5,200 IU of D3 a day.  Low vitamin D can cause pain and fatigue.  I also take malic acid/magnesium supplements that have helped me with pain and fatigue.  You can read about these in the Fibro 101 thread. 

 

I'm so glad you found us and joined in!  I think you will like it here.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from  you soon.

Sherrine 

 

 

 

Posted 7/31/2010 12:44 AM (GMT 0)
Welcome Sheryl! :)

You said you have two bulging disks. Part of your pain could certainly be referred pain - meaning that problem in your back can extend pain into other parts of your body: arms, legs, fingers, toes, etc. Isn't this something your doctor's addressed?

As far as I know, I don't think it would include swelling - but I'm not 100% sure. Pain, however, I am sure about.

Let me go get my favorite back care book .... (I've had several back injuries / accidents - and experienced referred pains all the way down my legs through my toes - sometimes like needles poking my toes.)

"Referred Pain from Your Back to Your Arms or Legs

Sometimes pain is felt a distance away from the location of an actual problem. This is called referred pain. Referred pain from the back happens when a nerve root in the spine is compressed by a disc, due to a muscle spasm or imbalance. Pain can be felt along the entire length of the nerve, even though the problem is located at the root of the nerve where it exits from the spinal column.

When you have pain in your arm, even down your hand and fingers, it could be referred pain from your neck. When you have pain down either leg, a condition known as sciatica, your pain could be referred from your lower spine. If this type of pain persists steadily for more than a month, it could be a problem that needs to be medically evaluated.

As you begin to apply the stretching and stress management practices described in Chapters Four and Six, and you have had referred pain in either your arms or legs, you may soon discover the pain diminishing. This is a favorable sign because it means that the nerve is becoming decompressed as the spine regains its normal alignment."

The book is Healing Back Pain Naturally by Dr. Art Brownstein. Most libraries seem to be able to find a copy within their systems. You could ask your doctor if they feel the exercises are safe for you specifically, and if so, try them. If you find relief, it would be great. If not, then you'd know it has another source. (And if your doctor says it is safe - at least you can not hurt yourself) The exercises are gentle yoga based stretches for those with back injury.

Post Edited (TheChickenPrincess) : 7/30/2010 6:48:17 PM (GMT-6)

Posted 7/31/2010 12:59 AM (GMT 0)
Hi there Sheryl,

And welcome!!! 

I have pain in my feet in the mornings too.  It last about an hour and then goes away.  I don't know what is causing it, but as I get older, a lot of the things seem to go along with age.  So I always figure it is fibro or age setting in.  lol...

Do check out the fibro101 thread, first one on the forum.  I think you will find it very interesting. 

I hope that you are feeling well.

Keep posting.

Hugs, Karen

Posted 7/31/2010 4:40 PM (GMT 0)
Hi, and welcome! I am new here too and waiting to find out what is wrong just like you are. I, too have a bulging disc, in my lower back. However, all the doctors I have talked to said it wouldn't cause upper body pain because of the nerve pathways. I am curious to find out more a bout referred pain though. I did do something to my hip and it hurt for 7 months... so maybe the hip pain was actually referred pain from my back and I really did something to my back instead? It's all very interesting. Since I hurt all over, i just feel like there is more to it then just the bulging disc. I am seeing a chiropractor and it is not giving me any relief at all. What do you do to treat your bulging discs?

Keep us updated on what you find out! You should see if you can have a tender point test done. I already got everything else ruled out and am waiting for a tender point test.

take care!
Kellie
Posted 8/2/2010 1:15 PM (GMT 0)
Thanks for all of the input, advice and ecouragement.  I'm so sorry I missed the sticky at the top of the forum - that will probably give me all the information I need - but I really do like hearing it from other people - because we can relate!

So many wise statements and sentiments here. I really appreciate it.

Chicken Princess-they claim the back pain is completely unrelated to the leg "inflammation." I don't know how they can be so sure when they have admitted they don't know what's wrong with my legs.

Kellie - I use the fentanyl pain patch for my bulging disks, the 100 mg strength (which is quite potent).  I started at 50 mg and had to keep pushing it up to get relief.  Luckily, my internist is great about working with me on that.  I have lortab for break-thru pain but I'm pretty much opoid tolerant so it doesn't do too much.

Thank you for all the answers, advice and fellowship.  I truly appreciate it! (and don't feel quite so crazy)

SherylN

Posted 8/2/2010 1:18 PM (GMT 0)
Welcome to the boards Sheryl
I'm new myself and there are lot of wonderful ladies there and I'm sure that someone can help you or point you in the right direction

Hugs and Blessings
Posted 8/2/2010 10:16 PM (GMT 0)
SheryIN - Keep us updated as you learn more - if you feel comfortable with that. This might be useful info to others that you discover. I too find it irritating when they can't tell you a reason, but they're quick to say, "oh, but it can't be THIS." nono @ Docs who do that. Grr!
✚ New Topic ✚ Reply