Pain in one location

[jfpayne]

Hi, I have a question for the group.  My husband was recently (Friday) diagnosed with fibromyalgia.  We've had some difficulty accepting the diagnosis primarily because his pain is centered in both knees.  It does not migrate.  While he will have occasional pain elsewhere, that has never been close to the pain in his knees.  There's no other explanation for the pain.  Is this possible?  Do some patients have pain that stays in one location?

[Robby]

One diganostic criteria is "pain in all 4 quadrants of the body".

Having said that 60% of my pain is centered around an injury to my lower back. In the beginning the pain didn't travel very far from that injury, so what you described would not be unheard of.

I'm sorry I haven't been very helpful, but that's what I know. I'm sure someone else with better advice will be along shortly.


********WELCOME***********

[jfpayne]

Thanks robbie.  He's been through so much testing and we even went to Mayo Clinic.  No one can come up with anything physically wrong (we even checked for mold and heavy metals) so they left us with, "it MUST be fibromyalgia".  He does have a host of the other symptoms (fibro fog, sleep disturbance, etc.) but frankly who wouldn't after all this testing with no answers!!  I've developed a lot of respect for fibro sufferers.  You all deal with a lot.  I just want them to get the diagnosis right.  Thanks for weighing in.

[denny]

Hi,welcome
I think its progressive even though its not suppose to be so I guess it could be fibro,but I have inflamation in left ear and after two yrs of testing nobody knows what it is.its not fibro.
My point being that things like this happen.I'm sorry it happen to yours.

Try asking about auto-immune disorders.

[jfpayne]

Thanks Denny.  He's 100% clear of autoimmune.  That's where we started.

[ronr]

Welcome jfpayne !

They have revised the criteria for Fibro but pain in all four quadrants I thought was still in there.  Doesn't matter, I have known others that had the pain in one location and "enjoyed" it spreading from here to there and then to where it was all over.  Something to really look forward to if that is what develops for him.

I'm sure they tested the heck out of him and they know more than I do, but you can see why some folks call it a wastebasket diagnosis.  As in his situation, they can't pin it on anything else, so it must be Fibro.

Was there any knee injuries involved or excessive work the would cause the knees to wear out prematurely?
How old is he?
Are there any other symptoms from the LONG list of possible symptoms?
Finally, what are they doing for him, if anything?

Glad to have you here and I hope we can help some.  He is welcome to poke around and see if there are any topics that catch his eye.
More later...

[jfpayne]

Thanks!  He is 37.  His pain started in 2014, went away for about 3 months and came back at the beginning of this year.  No injuries, overuse, etc.  He exercised at the time (not a change) and we moved into a 2 story house, but they've MRI'd and X-Ray'd his knees.  Nothing to explain the pain.

He definitely has (more recently) extreme fatigue, stuttering, shuffling gait, headaches (not responding to medication), vision problems, short term memory issues, depression, and sleep problems.  He thinks I'm crazy, but I think he has become more sensitive to medications.  He's had bad reactions to 3 meds lately from completely different classes.

They advised him to take nortriptylene (sp?) to help with (1) the headaches, (2) the depression and (3) might calm some of the overactive nerve response driving the pain.  Aside from that, he's tried Cymbalta with no effect and we didn't hear positive things about the medications.  So he's been advised to really focus on lifestyle modifications.

[augoldminer]

Thanks Denny.  He's 100% clear of autoimmune.  That's where we started.

There are over 155 autoimmune disorders and doctors test for about 60 most common ones.
https://www.aarda.org/autoimmune-information/list-of-diseases/

I tested negative for autoimmune disorders at first and later after biopsy  was found to have castleman's and sarcoidosis.
the only high test i had was CRP.

Did you have a punch Biopsy of the skin before they gave to DX of fibromyalgia.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4348533/
http://www.painresearchforum.org/news/33529-multiple-studies-one-conclusion-some-fibromyalgia-patients-show-peripheral-nerve

[jfpayne]

His bloodwork is completely normal.  No elevation of Sed rates, c reactive proteins, etc.  Plus, he went through 2 separate autoimmune treatments and huge doses of steroids (both oral and IV) with no improvement. He even had a spinal tap which showed nothing.  All normal.  They did not do the punch biopsy because a neurologist's exam ruled out peripheral nerve issues (no loss of reflexes or sensation, etc.).  Neuro offered it but said he was 99% sure it would be normal.  We chose to skip it.  We've done every other test and had normal results. 

[foxgrove]

OK... first things first, Welcome to the family jfpayne,

Thank you so much for caring for your husband and believing in him through this.  I think one of the hardest things to face is not being believed while your world is falling apart inside you.  You are truly a blessing to your husband and a one in a million lady!  Bless you and thank you for continuing to help him to get better.

You are not going crazy!!!  That's an important part of this!!  Yup, these weird things are really happening and they may never fully make sense.  The diagnosis and tests and stuff not making sense doesn't make you crazy, it just means we haven't quite learned enough about the body to truly understand what all can go wrong.

Sorry to hear that you're both face with a new demon to battle.  Fibromyalgia does not play fair, does not give up, and is likely one of the most stressful things that can happen to a marriage.  Hang on to each other... don't let go no matter what.  You are each other's safe place and it is vital that you both understand this.  This disease will try like crazy to make us look weak, to make us look like liars, to make us look insane.  Don't believe it... believe him and believe IN him!

I really am not in a position to tell a doctor that they have the diagnosis right or wrong especially seeing as he's gotten diagnosed at the Mayo.  I believe they'd call it atypical fibro as it's not quite bang on the criteria like some cases.  It may change if further testing finds something they missed but really, it sounds like the poor guy's already been dissected!!  I would add in a request that you have him checked for small fiber neuropathy as that would change his medications but realistically, the possibilities generally put us all in the same mode of therapy, regardless.

He needs to keep moving as best he can.  Napping is a reality at this point but don't just stop because of whatever reason... keep trying, keep stretching, keep moving.  If you don't use a muscle for long enough, it becomes 100 times harder to get it back into condition where it won't exacerbate the pain than if you'd just keep working it.  Exercise will become a four letter word and will need to be modified to what you would expect of an 80 year old most likely.  I find that warm water pool movement is great, just don't get in with the aquasize crowd or you'll be so tired at the end they could pour you into your car seat.

Above all things, you have a safe place to be... both of you.  Please feel free to dig around and get to know the place.  There are hundreds of years of knowledge and practical life experience in these pages... hard earned be many members now and past.  Kick back, grab a beverage, pull up a comfy chair, and sit awhile.  The folks here are some of the best you'll find anywhere, and now you can call them family.  Welcome home.

Fox

[ronr]

I was thinking the same thing, thank you for watching out for him.  Enough with all the tests is what you both must be thinking.

Unusual reactions to medications is pretty normal for Fibro.  One thing that has not been brought up yet - Is there a history of Fibro in him family?

Heat as in warm water, heating pads, etc. seem to a lot but not all of us.  That along with slow range of motion stretching (think a 90 year old) keep us going.  Shuffling gait though makes me think of another problem, just can't think off the name of it right now.  Fibro is not a diagnosis of exclusion, you can have many otheer in association with Fibro.

What are they doing for him now, meds etc. ?

[denny]

These things happen?
That could have sounded dummer but I don't know how.

I meant these things happen without a fibro dx.

[db]

Mine started with a pinched nerve in my neck.  Over time, I realized I had muscle problems essentially all over my body due to chronic myofascial pain (CMP).  It is common in allot of us with Fibro.  My guess is the neck was my weak point.  Your husbands might be the knees. 

The good news, is unlike Fibro, CMP is somewhat treatable.  The hard part is getting someone to confirm the condition.  Most of the good doctors don't even look for it.  Most hardly touched me.  I finally sought out a special massage therapist, who, over time finally concluded I had it! 

It seemed so obvious to me.   

Accupuncture around the knees might help.  It's worth a try.   I did it out of desperation because I was really not improving.  It slowly turned things around.  I should emphasize "slowly".  I know some people talk about getting an immediate improvement that doesn't last.  That was not the case for me.  Quite the opposite.   

If you go that route, tell them to be aggressive.  I take pain meds when I do it.



db

[jfpayne]

Thanks everyone.  He was checked for small fiber neuropathy.  His taking nortryptiline for headaches and trying some supplements.  We will try the acupuncture and massage (even temporary relief is welcome). 

[db]

Just a heads up.  Expect to not feel that great after treatment.  I never do!   I think I don't get much long term benefit from massage and the cost is about the same as accupuncture. 

I constantly massage my neck and upper back though.  It's more of a preventative measure.  For a long time even this was too hard.     But I was quite bad at the time.

db