Pain and tired all the time

I am new to this group, just found it today.. I am 25 yrs old and been living wtih NF my whole life. Through school I was in special classes due to Learning disabilities, and was very small. Still am to this day.. I have been having alot more problems then usual. I get extremaly tired through the day and I have so much pain sometimes that I cant even get out of bed. I go to the doc. and they just brush me off, not many doctors know anything about nf so they dont see it as a problem.. I just found another neurologists so hopefully he can help me..So my qustion is what does everyone do for pain and energy..

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hi Twlya. I cant say I know what the pain is like. Ive been pretty lucky that way so far but i am noticing my back hurting a lot more. But the tired part i can. I just thought it was me. Im tired all the time. I get enough sleep i think but it seems im always tired. I wish you luck with the new dr hopefully he can give you some answers

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We all know how you feel. The only thing worse than suffering, is suffering and going to somone for help who just brushes you off.

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If your day to day pain is not too bad, then a good pain med is Tramadol, it does not make you drugged out, but makes the pain a lot more tolerable. The reason we get so tired is becuase of the pain, we do not sleep good, even if you do not wake up, and the pain drains us. It is not so much because of how bad the pain is, but because it is there ever second of every day, it never goes away.

For break through pain you will need something stronger and you will just have to try pain meds until you find the right one, everyone finds one the like and one that they do not like.

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I can't tell you what works for you, but I can tell you what works for me. I use Lidoderm patches that were developed for shingles. It's a topical patch that stays on 12 hours, off 12 hours, and is non-narcotic. (I have a plexiform neurofibroma that surrounds my rib cage and spine.) For the really bad days, I use percocets. I am tired all the time, and being a stay at home mommy, it is not a good mix. I try to ignore it, but there has been times that I have fallen asleep while my 16 month old was napping, and my 4 year old was playing. He'll tell me to stop snoring! But it scares me. I've started to take vitamins to see if it helps. I have a hard time with house work, and yard work, some days I just have the energy to care for the kids and cook. It really sucks....

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I take large quantities of narcotics (prescribed) and I have NEVER felt drugged out or high from them. I dont like how pain meds are a dirty subject. For all the fancy new meds they come out with, I think plain old stuff works best. When depression meds have the side effect of causing suicidal thoughts and behavior, and it's still prescribed... somone has dropped the ball. Narcotic pain meds may be "addicting" but my NF isnt going anywhere, so what does it matter at this point. Neurontin, Tramadol and lyrica and all that stuff do nothing... I count myself lucky at all that my family practice doc takes me seriously at all about my pain. Neurologists swear to zeus that NF doesnt cause pain... sheeesh.

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I am also in pain all the time. But I am lucky I have doctors that believe me. I take
7.5/500mg of oxycodone(percocet) 4 times day
500mg naproxen 3 times a day
350mg soma
these are the ones that I take for pain I also do not feel drugged out or high from them.

I tried Neurontin and felt more drugged out and could not think on it more then what I take now.

Good luck to you and I hope you can find a doctor that will give you the meds you need.

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Hi there...im new to this site and not much older then you and was wondering if you have had your vitamin d3 levels checked? I know exactly how you feel. I have NF my whole life and several years ago I was achy all over with bone and muscle pain, fatigued all the time, and had a loss of appetite as I was finishing up college. All the doctors I went to told me it was just depression or all in my head. After several tests it turned out I had a Vitamin D deficiency (low levels of D3). I go to an endocrinologist now and she doesn't know if it has anything to do with NF yet. I have to take daily over the counter vitamin D3 and get blood work every 3-5 months. Because of this I also have osteopena and was wondering if anyone else has expierenced the same situation?

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hi, i have nf2.....i'm in constant pain and take pain meds.
i also get tired very easily, i think because it takes so much energy for me just to walk across the room

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I first want to tell you the first thing that comes to mind. Have you had a CBC blood test to make sure everything is ok? The reason I ask is, because I've had a few family members that had rare blood disorders that caused them to be really tired. So if anything, please at least check that out. Different things run with NF-1 for sure. Not just tumors and such. Take care and wish you well.

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