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General Questions and Answers For learning, sharing your experience, and exchanging information about Multiple Sclerosis. Please discuss medications in the Medications forum, and natural supplements in Tara's forum.

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Old 07-07-2012, 01:17 AM
Kelsey.23 Kelsey.23 is offline
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Join Date: Jan 2011
Location: Texas
Posts: 80
Bone aches - feels like growing pains

For a few years I have had problems with deep bone aches that feel like awful growing pains despite the fact that I stopped growing years ago (I'm just short of 22). Now it's getting to the point where these aches are causing me agony - they come at random, have no pattern, and when it hits I have to stop and sit/lay down for the rest of the day. I can't even get to sleep tonight which is something I NEVER have trouble with. The one thing that has been the same is the fact that the aches always happen in the sides of both of my hips, my upper femurs, mid to low calves, and ankles. I am on Tysabri as of March of this year if that counts for anything.

My neurologist is very good and takes a long time to get an appointment with (my next is at the end of August) and since she stays so busy we can't just call on a whim for questions like this. So does anyone out there have this problem? Take any medications for the pain? Do anything to relieve the aches? Please help!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
"My grace is sufficient for you, for my power
is made perfect in weakness." -2 Cor. 12:9

dx 11.23.10 RRMS
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Old 07-07-2012, 02:10 AM
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CGMoonbeam CGMoonbeam is offline
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Join Date: Feb 2007
Location: Arizona
Posts: 477
My feet hurt a lot a few years ago, like they were broken, but yes, I get these pains. You should be able to call the neuros office to talk to her nurse, but have you called you primary? Even if the pain is related to the MS he/she should be able to give you something for pain. I take Flexoril for muscle tightness and Naproxen for pain.
Dx 12/2006; first symptoms about 1984, but maybe earlier--on Gilenya and Ampyra.

"God has a lot of explaining to do"--Frida Kahlo
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Old 07-07-2012, 07:54 AM
Thomas Jackson Thomas Jackson is offline
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Join Date: Dec 2011
Location: Birmingham, AL
Posts: 236
I had this in my hip bones and could feel this pain regardless of moving , sitting , or laying down. I went to my primary as neuro took months to make appointment. I was prescribed Oxycodone for this and a host of other pain problems , mainly in my legs. I'm on Betaseron (and Hope).
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Old 07-07-2012, 08:18 AM
Ihb7337 Ihb7337 is offline
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Posts: 81
You are not alone with your bone aches, or at least what feels to me like bone aches as well. I started with these type of aches in probably, 2004? Or so, long before I was diagnosed( in fall of 2011). Mine are always bilateral ( both sides of my body), never unilateral (only one side).

My pain spots can be my elbow, wrists, knees, sometimes ankles, also upper and lower legs but not often in legs.

I have been on various narcotics for migraines so eventually ended up on oxycodone for migraines , bone pain, and shoulder pain ( injured rt shoulder and had surgical repair but is bad again)

I would take ibuprofen or naproxin if I could but both of them make me ill, so I have to use Tylenol/oxycodone combo or just plain oxycodone .

Everyone is different in terms of response to medication and relief of pain. I would bring up your issues with either your PCP or neuro to see if they can help you . Your pain is real and it's ok to ask for help with it.

If you can tolerate and get relief from one of the NSAIDs like ibuprofen or naproxin , then go that route. The narcotic pain relievers can be helpful at first, but the longer you are on them, your body can become used to the dose and require a higher dose to help with the pain. Plus narcotics require frequent doctor visits, since most ( other than vicodin, I believe? ) have to be written out for each refill.

Hope this has been helpful. The pain can be awful! I've gotten to the point where I will pace around my house due to the restlessness that is created by uncontrolled pain. Before I got on a good pain management routine, I had gone to ER due to extreme pain.

Please discuss this with one of your doctors. You don't have to live in wishes........ilsa
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Old 07-07-2012, 08:19 AM
MandaPanda2888 MandaPanda2888 is offline
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Join Date: Jun 2012
Location: Indianapolis Area, Indiana
Posts: 121
Me too

I was diagnosed recently and have the same problem lately. I would see your pcp ASAP. That's what I'm going to do. Good luck!
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Old 07-07-2012, 09:02 AM
sgrammied sgrammied is offline
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Location: Born Syracuse, NY live in Richmond VA
Posts: 212
Yes I have this pain. Been in a flare since April. It feels like some one is breaking my bones, or at times (mostly now) like some one is hammering railroad spikes in several areas of my legs. I take naproxen and the Dr. upped my neurontin (sp?)
When I walk the pain is so bad, it shoots. I try to stay off my legs.
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Old 07-07-2012, 10:38 AM
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Shashi Shashi is offline
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Location: Knoxville, TN
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Are you sure it's bone pain and not muscle pain like growing pains are? Spasticity can cause tremendous pain and tight muscles. Many here, including me, take baclofen or Zanaflex for the pain, which does help a lot once you get it in your system. (I've been on baclofen since 2006.)

I hope you get some relief soon. Big hugs!

Joy is not the absence of suffering. It is the presence of God.
Cut aspartame from my diet in 2012 and my symptoms have slowly disappeared. Interesting!
Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg) = No more fatigue for me!
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Old 07-07-2012, 12:03 PM
MS TOO MS TOO is offline
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I get a deep pain in my right arm which I described to my docs as a deep burning pain. I've never thought of it as bone pain, but that would seem to fit. When the pain is bad it is bad and I had some really bad sleepness nights.

I talked with both my Neuro and PCP and they checked out everything they could think of, all negative, before deciding the pain was from my MS. Vicodin is the only thing that helps and yes, even vicodin requires oversight from the doc and a new presciption each time. All of the narcotic pain relievers are tracked closely because of the abuse going on.

This makes it tough for those of us that have a real need for pain meds. My HMO had me talk to their pain management section and the line of questions made it sound like they were treating me like a junky and would require pill counts and drug testing for street drugs. I told them I really had pain not a drug problem and have a nice day. They never contacted me again.
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Old 07-07-2012, 12:30 PM
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Sequoia Sequoia is offline

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I'm another one who has what I'd characterize as bone pain because it feels so deep, but in reality it's muscle pain caused by spasticity, and it's helped by Baclofen.
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Old 07-07-2012, 05:06 PM
Kraheera Kraheera is offline
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Join Date: Oct 2011
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My neuro just started me on Neurontin for the same thing. It's definitely begun to take the edge off at least, though if I overdo it I feel like I"m on no medication at all and it will have me in tears.

For instance... yesterday I overdid it because of the kids. And I was up. All night. Because I got a migraine around 8:30 and my legs flared and... and I ended up drinking a ton of water and watching tv while rubbing at my legs. All. Night.

Talk to your doctor. Believe me, you want to take whatever chance you can get to deal with this pain.
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Old 07-07-2012, 05:09 PM
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valeriem2220 valeriem2220 is offline
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Location: Battle Creek, Nebraska
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Yes I have had this for years. I actually explained it to my Dr as "My bones hurt"
Turns out it was spasticity and
I was given Baclofen and it has helped immensely.
DX 10/26/11
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Old 07-07-2012, 09:08 PM
Kelsey.23 Kelsey.23 is offline
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Join Date: Jan 2011
Location: Texas
Posts: 80
Thank you for all the sweet and helpful responses so quickly, I definitely feel like I can relate to more people here than anywhere else! I have taken neurontin for other nerve pain in the past and have never really had success with it. Ibuprofen does not help either. The pain is not a burning/breaking, just deep aching. It feels the same when moving, sitting, standing, laying...anything.

I find it strange because in the past when I went to the Mayo Clinic, I described it this way and was asked 'This is what you think spasticity is?' But then again the same doctor also told me 'You look fine.'
"My grace is sufficient for you, for my power
is made perfect in weakness." -2 Cor. 12:9

dx 11.23.10 RRMS
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Old 07-08-2012, 09:37 AM
ars320 ars320 is offline
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Join Date: May 2010
Posts: 52
I have had trouble describing a pain I have had in my left arm for over a month now, but I think it's what every one here is describing. A deep ache that comes and goes, can be in the upper or lower arm, or even just in the wrist or base of the thumb. It throbs and can be worse with certain movements of my shoulder, and when I am trying to sleep. When it is severe I feel like I could throw up. I have been taking naproxen 2 tabs up to twice a day, but I am not even sure if it helping.

I haven't mentionned it to my neuro, because he is hard to reach, is already getting a lot of calls from me to fill out insurance and disability paperwork, and tends to tell me symptoms are not from MS (he said dizziness is probably from a virus, etc). I just suspect he will say the pain is not from MS, even though when I had similar symptoms a few months ago an MRI of the c-spine showed edema tracking down from a large plaque to the area that would correspond to the pain. The good news is that I will be seeing an MS specialist (my usual neuro is not MS specialist) later this week.
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