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Posted 7/25/2008 4:48 PM (GMT 0)
Just wanted to update you quickly on my doctor's visit before I head out the door.  Not much news,  my NP is stumped... still.  He says my symptoms are too varied.  When he thinks it might be one thing, there is nothing to support it.  He was leaning very strongly towards fibro, but my pressure points have disappeared, other than the 2 at the knees and 1 elbow.  Has this ever happened to anyone?  Also, my pain and fatigue aren't consistent with fibro.  Well, he says that, but what I've learned from reading all your experiences is that no 2 cases are alike, and very few are 'text book'. 

Neurologically, everything till checks out, other than the hyper reflexes everywhere but the left foot, where there is decreased sensation.  And I still can't feel the vibrations on my skull from that 'tuning fork' thing.  lol, sorry, I have no idea what that test is called!  It looks like a tuning fork for music, and they place it on bone, I tell him if I can feel the vibrations. 

More of his findings:

My headaches aren't consistent with migraines...

The halos I see around lights are only there at night, so not consistant with glaucoma... And I was checked just in January.

The floaters are harmless, but why did they happen at the same time?

My facial pain is not consistant with TMJ or TN...

He went through a depression checklist, but I don't seem depressed or anxious (although probably very stressed, if my back is any indication.  Yet we could think of no stress factors that have changed since March)

He told me he is going to do more research (the list of symptoms I brought him was very helpful, if even more confusing for him) adn confer with his supervising doctor again.  If they can't figure something out, he will send me to both a neuro and a rheumy.  In the meantime, I have to go for more blood tests, he wants to check all kinds of vitamins now.  He wants to wait until those results are in to put me on supplements.  And he is sending me for physio for my back.  The trapezoid muscles are so tight, that was very painful for him to even just touch. 

He said he will call back next week.  I hope they will have an idea by then, and I'll know a little more!  I just want answers so I can start to heal!

Now I'm off to enjoy this sunshine with the kids.  I'll check back tonight adn get caught up on the posts from the last few days.  Hope you are all having a good day :)

 

Posted 7/25/2008 5:24 PM (GMT 0)

mamanan,

 

I'm so sorry that you are trapped in this "box."  Even though I was dxd with fibro in June (after YEARS of feeling this way), I am still trapped in Lupus-Limbo.  To me, it seems so clear that I probably do have lupus (but, I'm not gonna self dx), but my rheumy won't give me a straight answer.  I've found a lot of people who have been dxd with lupus who have a lot less symptoms than I do, and their bloodwork is almost normal-while mine practically screams lupus.

 

Anyway, sorry to vent.  But, I do understand what you are going through.  Some days I feel better than others-and some days I am curled up in the fetal position on the couch. sad   I have learned that everyone's symptoms, pain levels, etc, are different, so I don't think docs should rule everything out before getting a clearer picture.  I mean, my GP practically told me that I have lupus, and now my rheumy won't say yes or no.  BTW-after doing some research, I've learned that some docs just don't know enough about fibro, lupus, and all the other hundreds of auto immune diseases.  But, have you ever met a doc who has the b*lls to admit that they just don't know enough? eyes   Yeah, me neither. LOL tongue

 

I hope you (and all of us in this position) find some answers-any answers-soon.  Enjoy your day with the kids! :-)

Posted 7/25/2008 5:37 PM (GMT 0)
I hope you get some answers soon.  The wondering can drive you bonkers!  I know that my tender points will get better and then get worse.  In some places I'm really not tender but in other places I jump if touched.  So, that can fit in with what you are saying.

 

I don't know of a single person that has all of the symptoms of fibro.  The main hallmarks of fibro are the muscle pains...especially in the shoulders and neck area...the fatigue do to unrefreshed sleep...and the fog.  At least that's the way I have understood it.  We all have varied other symptoms, too.  Many have TMJ or migraines but I don't have either.  So, there is no hard and fast rule to fibro.

 

Maybe the bloodwork will rule out some other things and will help with the final diagnosis.  Let us know what happens.

 

Sherrine

Posted 7/25/2008 8:34 PM (GMT 0)
I think you all have to be re-evaluated forLyme Disease. You need to see a lyme literate specialist. www.underourskin.com - see the trailer for this movie. Please let me know if I can help.

I have lyme and have been misdiagnosed with fibro, CFS, some people have been misdiagnosed with lupus, arthritis and others. The symtoms are so varied but if you have migrating pains, headaches, joint/muscle pains, brain fog, extreme fatigue, head pressure, there are so many I can email you the list.


Post Edited By Moderator (Sherrine) : 7/25/2008 4:39:27 PM (GMT-6)

Posted 7/25/2008 10:40 PM (GMT 0)
I took out your email address because anyone in the world could see that.  We have members post it in their profile where only other members can see it.  This is for your safety.

 

Sherrine

Posted 7/25/2008 11:07 PM (GMT 0)
Ok, thanks. I really want to help people so that they don't have to go through what I've been through.
How do I put the email in my profile?

Thanks so much.
Posted 7/25/2008 11:15 PM (GMT 0)
Just click on your screen name at the left of your post.  It takes you into your profile.  At the top of the page you will see a bar that says "control panel".  Click on that and you can fill out a profile for you.

 

Sherrine

Posted 7/25/2008 11:45 PM (GMT 0)
Hi, I'm new here.  I can relate to going through a tough time getting diagnosed.  It took doctors two years to diagnose me with fibro. I had so many test done, some of them pretty intrusive.  I was diagnosed in 97.  Since then, through years of research and trying everything, I am doing pretty well.  I still have those days of fibro fog and pain, but it is much more manageable.  Hang in there.   yeah
Posted 7/25/2008 11:59 PM (GMT 0)
Have you had a brain SPECT test? Were you ever on antibiotics? I really do not believe in - just waking up one morning to something wrong - without a reason. To me, fibro is caused by something - either a surgery or medical issue. If it pops out of no where I am confident it is a bacterial infection that needs medication. Please watch the documentary trailer at www.underourskin.com. See if you can relate, if you can, maybe you need to see another doctor. Which state are you?
Posted 7/26/2008 1:34 AM (GMT 0)
Thanks so much for your replies. This waiting is so hard, I've never been the most patient of people, lol. Kelly, I really think that my NP, good as he is, doesn't really know much about fibro. Strange though, as he brought it up the last time, and he seemed so sure. But he isn't afraid to look things up, and he will eventually send me to a specialist, it just seems to take so long.

Sherrine, thanks for your input on the pressure points. To me fibro really seems to fit (most times anyway). That weird headache behind the head, the sore upper back and shoulders (and I've had that most of my life), dizziness adn fibro fog, even the difficulty focusing the eyes... this is all things that too many of you share, and that is common to one disorder. I was really surprised when the pressure points didn't hurt at this visit, adn was feeling very discouraged that I was back at square one. But I'm more hopeful now, if he can only send me to a rheumy that deals with this already!

Thriving, first off let me welcome you to the boards! You have found a really wonderful place for support and information, the ladies here are truly inspirational. Wow, 2 years? I do feel like a whiner, it's only been since May for me. And I am lucky that my NP takes the time to listen to everything and follows up. I'm happy for you that you finally got your dx. I really believe that it is the first step to healing, or at least managing.

LF, I do thank you for your concern, and I find it admirable that you want to help people. I do not think that lyme fits with me though. Some people might also get scared into thinking that something is wrong with them that isn't really there? Limbo is hard enough as it is. It sounds like you had really hard time finding relief, and I'm sorry for that. I do hope to see more of you around the board, and I'm looking forward to getting to know you.
Posted 7/26/2008 1:48 AM (GMT 0)
I don't want to be annoying but are you sure its not lyme? The symptoms can include but are not limited to: brain fog, difficulty concentration, difficulty with focus, eye floaters, eye issues, teeth or nerve pain, jaw issues, ear sensitivity, dizziness, migrating pains - joint and muscles, including back, neck, etc, etc, stomach problems, joint stiffness, swelling, sore throat, light sensitivity, hearing sensivity, headaches, rash, fever, chills, list goes on and on.
PS. Lyme is treatable and getting into remission is often a success with the right medication and time.
I would like for you to see a lyme expert if you are open to it. The tell tale sign is if you start the antibiotics and feel much worse, you have it - it is because the antibiotics cause a die off recation where the lyme is killed and releases a toxin into your body so as to make you feel worse or have exaggerated symptoms. It is worth a try isnt it? I mean there is no real treatment for fibro? and there IS one for lyme...so why not try it? You may be thankful that you get to experience a full life again Please think about it. Email me with any questions. I wish you the best. If you are in NJ I will take you to the doctor myself!
Posted 7/26/2008 2:29 AM (GMT 0)
LF1980,

 

I can only speak for myself, but I have been tested for Lyme-and I don't have it.  Believe me, I thought that I might-due to growing up around ticks as a kid (in the south), and being a vet tech for over 17 years.  But, I have been tested (and retested) and I don't have Lyme. :-)

Posted 7/26/2008 7:17 AM (GMT 0)
You can still have lyme even if you do not test positive on any blood tests. There are hundreds of strains of lyme and the blood tests only test for a few of these strains. Maybe people go untreated because they think that a negative blood test means they do not have it when in fact the symotms and hisroty tell a different story. Have you had a brain SPECT test?
Just an FYI. I wish you luck in feeling better.
Posted 7/26/2008 3:32 PM (GMT 0)
Hi,LF!  We have gone through all this about Lyme, before, on this forum.  We people with fibro have been checked out and by very good doctors, I might add.  We have gone through all of the testing and through rheumatologists and neurologist to rule out Lyme and other illnesses before we get the fibromyalgia diagnosis.  And, yes, we do know all about Lyme literate doctors.  As a matter of fact, I have the name of the closest one to me.  We've talked about the lab in California, too.  The symptoms you listed also fit fibro.  They mimic one another.

 

We always tell members to see doctors and get a definitive diagnosis because Fibromyalgia does have many of the same symptoms of Lyme, along with myofacial pain syndrome, MS, among others.  There is even a link to a thread about that in the Fibro 101 thread...the second thread at the top of the forum.  The link is called "What Else Could It Be?"  So, it does take a while to get diagnosed correctly and that's what our members are doing. But not everyone has Lyme disease!

 

I'm sure you are very happy that you have gotten results.  I'm very happy for you too.  Have you gone over to our Lyme forum?  They are wonderful there and your exuberance would be wonderful for the newbies!

 

Sherrine   

Posted 7/26/2008 3:57 PM (GMT 0)
Hi, Thriving, and welcome to the fibromyalgia forum!  You have come to a great place.  We have wonderful people that will help you live a full and enjoyable life with fibro.  I'm sure you have some great ideas for us too!

 

I'm so glad you joined us and am looking forward to hearing more from you soon!

 

 

Sherrine

Posted 7/26/2008 4:09 PM (GMT 0)
Momanan, you can't say your doctors aren't thorough with the testing. It took a full blown flare of feeling like my body had been beaten all over for me to get a dx. I had been going through testing for a long time and nothing fit til the flare and then it all fell into place for my doc.

 

Hi Thriving and welcome to our family. I'm glad you have things under control. Maybe you can share with us what is working for you.

 

LF1980, a lot of us with fibro share a lot in common with personality types, fibro starting after or during a very stressful time in our lives and the age of onset. I think if we all had lymes some of our doctors would have figured it out by now. Some have had fibro all their lives.

 

You really can't come on the fibro forum and give a dx of lymes. We aren't able to dx each other on here, that is for the doctors to do.

 

luv and hugs

Marlee

Posted 7/29/2008 2:03 AM (GMT 0)

Hi Everyone,

I am glad I found this forum.  It gives me something to look forward to checking after I get the kids to bed.  I am an older single mom, sometimes it can be pretty overwhelming.  I am sure a lot of you are there with me. 

I know I saw someone mention malic acid with magnesium the other day.  It really does help a lot.  I had to go without it for a couple weeks before having some test done and I saw a huge difference.  For me, staying excited about life really makes a difference.  I try to find things to keep life interesting.  I just ordered a kayak.  It came today.  I can't wait to get it out!  :-)

I may be having knee surgery soon.  I dread that because anything that interfers with my exercise routine sets me back.  If I can stay strong, I do well.  Have a good night, and thanks for being there.

Posted 7/29/2008 3:16 AM (GMT 0)
Hi thriving and welcome!
I too am an older single mom. I have raised two sons on my own and know how overwhelming it can get. My oldest is now grown and on his own, my youngest is 16 and I am in my (early-heehee) fifties. I know you'll like it here, this group is the best!
I have a girlfriend that kayaks and she loves it. I would like to try it myself. Do your arms get tired from paddling?
Good luck with the knee surgery- and it was nice to meet you! GamJill
Posted 7/29/2008 10:07 AM (GMT 0)

Good morning GamJil,

I am 46 with an eight and a four year old.  I don't know what I was thinking.  :-)   Somedays I think they keep me young and others (when I am in a fog) I don't know how I will survive. How are the teen years and fibro? 

Kayaking is great.  I haven't done it in a little while because I left my other kayak behind in the divorce, so I am sure there will be a time of getting used to it again and a little soreness.  When I did it all the time it felt great because it really kept my core strong.   I am going to go get some exercise before work.  Have a great day!

Posted 7/29/2008 3:34 PM (GMT 0)
thriving-
I just got diagnosed with fibro 4 months ago. It was not gradual, it was hitting a brick wall going 90 mph so it was a quick diagnosis. My son is a typical teenager and he helps me but only when asked to do something. It's all about "them" at this age! He has a very easy going personality even though he has Attention Deficit (which has it's problems- mostly in school with concentrating and being organized) otherwise it has been so much easier raising him now that he is this age.
I agree, they can keep you young and at other times just about do you in. I do have 2 granddaughters, one is 3 and the other is 3 months. And after an afternoon or evening babysitting I'm worn out! I give you alot of credit doing this everyday! And you work and exercise before work!? I'm tired just reading about it. Hee-Hee. GamJill
Posted 7/29/2008 3:43 PM (GMT 0)
I don't think everyone has lyme disease but if you came down with flu-like symptoms before the 'fibro' symtoms, you may want to be see a lyme specialist.
Posted 7/29/2008 5:48 PM (GMT 0)
Thriving, you have the right attitude!  A positive attitude and keeping moving has helped me a lot over the years!  Teenagers?  You will survive!  (Maybe  your kids won't, though! devil )

 

Sherrine

Posted 7/31/2008 2:57 AM (GMT 0)
Hi Everyone,

Long day!  redface   Took my sister for a colonoscopy to see if her colostomy can be reversed.  I am her care taker.  She has been fighting colon cancer for the past two years.  She is doing great now though.  It looks like they may be able to reverse the colostomy.  If any of you have not had a colonoscopy yet, go get one!!!!  nono   Colon cancer is very preventable.  Enough lecturing!  :-)   

Thanks for all the encouragement for child raising.   It is hard to balance all the roles we have to play.  It sounds like some of you are doing a great job!  Have a great evening!

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