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Posted 12/9/2010 4:33 AM (GMT 0)
I'm new around here so I guess I will definitely give you some backround. I'm 22 years old, married, with a son. I've dealt with back pain as long as I can remember. I honestly cannot remember a time when my lower back did not hurt. about 5 and a half years ago my hips started hurting and they never stopped. A little over a year ago my shoulders and upper back started hurting. I've spent most of the past couple years finding things to blame it on: I was pregnant, that causes back and hip pain, I was over weight, that causes back and hip pain, I don't exercise enough, I exercise too much, I sleep strange, I need a new mattress, etc etc etc. A large part of it was just that every time I brought it up with anyone I heard "You're just too young to be having ____(back/hip/shoulder) Problems!" It has finally gotten to the point that I just cant handle it anymore. I've been unable to spend a full day at work most days, driving is excruciating, and I've had several days where I cannot get myself out of bed without my husband picking me up and helping me stand. I consider myself a strong woman, I didn't cry during labor, I didn't cry when I got my IUD put in, I didn't cry when I had surgery on my knee, and through 50 some stitches in my face I only cried once (the numbing solution kept wearing off mid stitch). This has brought my to tears more times than I can count, so my husband finally convinced me to go to the doctor.

Aside from the pain I do have other symptoms, foggy head/ forgetting simple words things like that, severe fatigue and never feeling rested. those are the main two other symptoms that I can think of at the moment, but again with the foggy headedness these tend to slip my mind because they are so constant.

The first thing he did was order a back xray, which came up normal. On my second appointment he went over my symptoms and was pressing on spots on my back/shoulders/neck (and causing me to flinch in the process) and decided he should go ahead and send me to physical therapy to be sure, but that he wasn't confident it would help. He told me he thought I had the beginnings of Fibromyalgia since the spots he pressed on my back caused so much pain with very little pressure, and that every spot that was painful was a Fibromyalgia tender point. Now I have three issues with this process at the moment. My first issue is that this doctor isn't my normal PCP (she's been out of the office, this is my usual secondary doctor however), my second issue is this doctor and the phsyical therapist he referred me to is 2 hours away from where I live and we just cant afford for me to drive 2 hours away every day for 2 weeks for physical therapy. Not the co-pays, not the gas, and not the wear and tear on our car.

I understand that he wants to make sure it is something that physical therapy cant help with, but I really feel like I should just head straight to a rheumatologist and get an opinion from someone who knows more about Fibromyalgia. I guess I'm not sure why I was referred to physical therapy, when he said himself he didn't think it would help, instead of a Rheumatologist. I mean am I on the right track thinking that I should head to a rhuematologist?

I'm still kind of reeling from everything I've read about fibromyalgia (and I will be honest it does sound 110% like me) and the possibility that it might be what I have. Hopefully I can get some feedback on whether or not seeing the rheumatologist is the right direction to head (I don't need a referral for my insurance, so if there is more than a 2 week lag between when I call and when I can get an appointment I will find a more local physical therapist to see)

I'm sorry this seems so back and forth and confusing probably! I will update soon once I either get to see a rheumatologist or if I wind up in physical therapy. Thanks for listening.
Posted 12/9/2010 5:48 AM (GMT 0)
Hi Teresta,

I'm fairly new to this too, but sounds like you've been living my life for the last 5+ years! LOL I would refuse the physio...not only for the cost, but if your back and hips are bad, 2 hr car rides aren't going to help! I think you should see your dr again, ask for an MRI on your back. You could have a disc problem, and that would only show up by mri. If so, yes, PT could help, but I would wait until you can get something closer to home. Your symptoms do sound alot like fibro as well but you could have a few things going on. I would get the rheumatologist referral and also get some bloodwork done to see if there is another reason for the tiredness.

Good luck to you!
Krista
Posted 12/9/2010 6:16 AM (GMT 0)
I did actually have a full blood panel done a few days before I originally went to the doctor. He had thought the fatigue was mono as my monocytes were a little bit high but it wasnt mono and everything else was normal. He does want another blood panel to check for rheumatological problems.

I know that when they did the XRay that the radiologist said that the disc spaces were preserved so the discs are the right size at least and not compressed. I'm not sure why he didn't order an MRI after the Xray since that was what I expected him to do.

I'm mainly worried about the physio because I feel like the cart is being put before the horse. How can you put me through physical therapy when you arent sure what is going on and it could just wind up making the problem worse. I went through this with this practice and my knee, it was XRay, Physio, referral to specialist, Xray, MRI, Scope, and then the correct physio. If I knew that it was X muscle isn't strong enough and X isn't being aligned right and this is causing you to compensate by using your back in this way, then I would be comfortable with physio. When I went through this with my knee with them I was told my patella was fractured (False) and that I needed physical therapy. So i went through a month of physio with no improvement before I was referred to a specialist and had to do all the testing again, and then go through two months of physio to first correct the imbalance that the first round of physio caused and then correct the problem itself.

Thanks for the response =)
Posted 12/9/2010 3:20 PM (GMT 0)
Hi Teresta,

All my symptoms came on fairly quickly, within months of eachother, and I was lucky to get a diagnosis quickly.  I was diagnosed 4 years ago.  I think it's important that your Dr. does the blood panel to check for rheumatological/autoimmune problems.  I don't know if you've checked out Fibro 101 yet but within there it lists other diseases that Fibro symptoms can mimic.  Unfortunately in order to get a proper Fibro diagnosis you have to rule EVERYTHING else out first.  I remember feeling like a human pin cushion when my Dr. was trying to figure out what was wrong, every time more blood work would come back normal I'd go for another 5 of 10 tests.  I was tested for all the rheumatological/autoimmune diseases, diseases within my family, STDs, HIV, Lyme disease, even had genetic testing!  Test after test came back normal.  It's a long process but an important one.  Even now 4 years later as I'm having a terrible flare lasting for months and some new/strange symptoms I'm going through a lot of the blood work again.  It continues to come back normal, but we just have to be sure.  Oh, if only there was a blood test for Fibro.

As far as the PT goes, I'm not sure it is the time for that.  My first symptom of Fibro was sudden numbness and tingling down my left arm.  When I went to the ER and the first Dr. told me I had a stroke at 23 I lost it!  Then another Dr. came in and assured me that wasn't the case and decided it was a pinched nerve.  They never did a scan or anything to confirm the pinched nerve.  My old PCP then decided to send me for PT.  The physical therapist wouldn't work on me until he had evidence of a pinched nerve, where it was coming from, etc.  So I had an MRI of my neck and spine and there was no pinched nerve.  So the PT said he'd treat me but he wasn't sure for what he was treating me.  Nothing he did helped.  He suggested that I go to a neurologist for an EMG and that was normal.  The neurologist then scratched their head and sent me for a Brain MRI.  That was normal too.  The neurologist was then done with me because she had no idea what else it could be.  By that point more symptoms were presenting themselves so I was passed around.  But, my point of telling you all of this is, PTs are wonderful when they know what they are treating.  I have seen PTs that work with Fibro patients and know how to help them, but general PTs don't really know what to do for us.  If they know of a specific problem and the cause they can fix it, but if not then they seem to be more hesitant/not sure they can help.  I would suggest holding off on the PT until you do more testing which will hopefully point you in the right direction.  Especially because PT will be so hard/stressful to get to and cause financial challenges.

Finally, you have to be your own advocate.  In the beginning I went along for the ride and agreed to do whatever the Drs said, then I realized that I knew better than some of their recommendations.  If you think you need/don't need an MRI speak up, if you don't want to try PT yet tell your Dr. and ask to proceed in other areas.  I would make an appointment with a reuhmy and see what they have to say.  I only went to a reuhmy once for official diagnosis (my Internist already diagnosed me but wanted the specialist to sign off on it).  I decided to stay with my Internist for all treatment.  As I'm going through testing now for the second time, I'm pretty much calling the shots and my Internist is fine with it (within reason of course).  I'm the one telling them that if they're going to want to test for something in a week or two to just do it all now, I'm questioning tests they're ordering and the long term plans etc.  Only you know what your body is telling you, and while the messages are usually confusing and messed up I believe they help us bring the pieces of the puzzle together.

Sorry this post has been so long.  Hopefully some part of it will help you.  Good luck!

Posted 12/9/2010 3:57 PM (GMT 0)
Hi, Teresta, and welcome!  I'm so glad you found us and joined in.  Well, if it were me, I'd see a rheumatologist and see for sure what you are dealing with.  Being sent for something even the doctor doesn't think will work is not only a waste of your and the physical therapist's time but also a waste of your money.  We are all trying to hang on to as much of that as possible with our medical expenses.  I've had fibro for 23 years and have never been referred for physical therapy.

 

I do have back problems though.  I used to suffer really badly with low back pain.  I have scoliosis and the curvature in my spine plays havoc with my lower back.  BUT, once I learned how to get in and out of bed and in and out of the car correctly, I rarely have the lower back pain but I still have upper back, shoulder, and neck 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!

 

Be sure to check out Fibro 101...the first thread on the forum.  There are links to good information about fibro there and you will learn a lot.  There is a link to a list of symptoms and also a link called A Thorough Explanation of Fibromyalgia that might help you out.  But try to go through the whole thread because there is a world of info there.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Let us know what you find out because we do care about you.  Hope to hear more from you soon.

 

Sherrine

Posted 12/10/2010 6:11 PM (GMT 0)
Hi!
You sure are in a tricky situation.
I was sent to a PT about the same time as you while in the hunt for a real dx. I didnt want to go but I did and I think it ended up helping for 2 reasons and not at all because it made me feel better!
For one, I didnt have the best relationship with my primary doc and I wanted to show her that I was following all her guidance and that I was obviously trying to improve. (Much later when I was applying for SS, I think it helped then too to show that I was working as hard as the doctors asked me to)
And second, it turned out that after I went to PT for 1-2 weeks and my condition got much worse...it seemed like both my doc and the rheumatologist I saw used that as evidence that it could be fibro. It was just another thing that made them pause. It's like I had proof to back up what I was saying about repetitive movements making me feel worse.
So Pt didnt make me feel better but I think in a round the bout way it helped my case. It just comes down to how good of a relationship you have with your doc, if she is open to suggestions from you.
If you did go, I would certainly only go to someone closer and think of it as a trail. You dont have to stay if it makes you worse!
Good luck and keep us posted! :)
Posted 12/10/2010 9:28 PM (GMT 0)
Physical therapy doesn't sound like a good idea when they don't know what is wrong yet. You could end up worse than before especially if there is something wrong with your back. Based on your experience with this doc, I strongly suggest a second opinion.

A rheumatologist can check for fibro but you may still want to see a specialist about your back. You don't want to miss something, especially if it can be treated or fixed. I feel that someone should only go with a fibro diagnosis after everything has been ruled out.

If you do have fibro, people here can recommend some stretches and gentle exercises that can help you. Unless you get a great physical therapist who understands fibro, you'll be wasting your money. It's best to start any exercise slowly, very slowly but since PT sessions are usually 45-60 minutes, you are usually doing something the entire time. Something as simple as a hot pack on your shoulders can wipe you out. Throw in some extra movement and other therapies and you may end up worse. Everything they do may help you but fibro people can't tolerate too much all at once.

Lack of sleep due to pain can cause many of the symptoms as fibromyalgia. If the pain can be treated, the symptoms may disappear. I don't mean fibro can be cured, I mean that if you have fibro-like symptoms caused by something else, treating the underlying problem (and getting adequate sleep) can make the symptoms go away.

good luck.
Posted 12/10/2010 9:30 PM (GMT 0)
Hi, I was just diagnosed in Nov. and I can identity with some of what you said. Here is how it happened for me: in Oct. 2009 my hip started hurting so bad that I could hardly walk. I was already seeing a chiropractor for prevention/maintenance because my mom has a really bad back and I wanted to prevent it ( plus my husband went to her and raved about her) Anyway, so I thought the chiro. would help clear it up. 7 months later.... I was STILL in hip pain... she made me so mad because she kept telling me, "oh well, you must be triggering flares".... like I could help it! So I finally gave up and went to my doctor... I thought the obvious thing to do was to get an MRI because they are better than x-rays... no, the doctor wanted to do an x-ray.... THEN physical therapy.... and THEN an MRI... sound familiar? Well, I got a SECOND OPINION.... don't be afraid to do that.... and that was the BEST thing I have ever done.... when he found out how long I had been in pain, he ordered an MRI of my lower back...... and also an x-ray of my hip.... hip turned out normal..... but lower back turned out I had a moderate sized protruding disc!! Dr. thought it was referring to pain in my hip. Anyway.....I started getting more and more symptoms after that.... tingling hands and feet, numbness at times... muscle twitiches.... then bad hand and foot PAIN.... then pain went up into arms/shoulders/knees and then kept spreading.... I finally went to a Neurologist who did ALL the tests.... everything else was normal.... so then the NEURO.... referrred me to a Rheumatologist who after talking with me for five minutes decided I probably had Fibro.... he did the tender point test and i had 16/18 tender points and then I was FINALLY diagnosed... (I shouldn't say finally because the whole process from start of hip pain was only about a year_)

So my main encouragment to you is to NOT GIVE UP.... and be assertive with what you want. I flat out told the second dr. that I wanted an MRI and he agreed. Also, I agree with the other poster that two hours is much too long for you to drive for PT.... I would think that would be counter productive.

Hope you can find some answers soon! We are here for you!
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