Yes, well at least I do. At first they thought it was Fibromyalgia, then arthritis, then Raynards syndrome. But with my weight I couldn't take the Fibro meds, and it just didn't seem like it was just surface pain, more like down to the core of the bone and joint swelling pain. I started doing research on PTC and talking to my Neuro-Ophthalmologist and with increased pressure not just in your brain, but throughout your entire spinal cord it can mess with your nerves, muscles and joints. Now not all doctors believe this, but he says he has had so many IIH/PTC patients complain of the same symptoms that it has to be connected. I asked him if any of his patients had PTC/IIH and were NOT over weight and he said yes. So we both think it could be related and most likely is. Doctors are still learning about our condition. In 2004 most specialists and most doctors didn't know that certain medications could cause this or make it return if it was in remission. So, hopefully in the future they will find a cure, but until then, hang in there.
I find that warm showers and baths help with the pain. I also use a product called Sombra. It can be found on the web at http://www.sombrausa.com/ but I am pretty sure you have to get it from a PT/DPT (physical therapist). On the website there is a section to buy an alternative one that the company makes that you don't need a license in order to purchase, I believe it has the same active ingredients but isn't as strong. You might even be able to get your PCP or NO or N to order it for you. But your local PT should have it or can get it for you. It is relatively inexpensive, I think I paid $7.00 for a 4 oz. jar. a little goes a long way. I love this product and it's all natural. Now don't use too much on one area however or it can feel like icy hot. But my knees ache all night long. I bought some of this when I hurt my back a couple of months ago and figured why not try it on my knees. I did and finally got a good nights rest without taking any narcotics or nsaids. It has a nice menthol/lemon/lavender scent that isn't overpowering. Now I use it on my neck and shoulders too. It helps me relax and get some sleep without pain.
I hope this helps!

I started feeling deep to the bone pain/ache in the bottom of my feet, thighs and knees. I just figured the Dr. was going to say it was my weight but he didn't he said it must be the PTC/IIH.

I get this with my joints. But right now I am experiencing hypotension instead of hypertension and my brain is sagging a little in my last MRI. So I don't know if that's what's causing my joint pain or not. Hope they can get yours fixed, the joint pain sucks badly.

Thank you all for your responses. This is very helpful. I have been told that I was thought to have fibromyalgia...as far back as my early 20's. This may still be true, but like you, heidiacotton, I refuse to take the meds used for this as they have been known to be associated with enormous weigh gain. And although weight is not currently an issue for me, I don't want it to become an issue. It makes a great deal of sense that the pressure on the spinal cord affects our nerve endings. Certainly if multiple IH'ers have reported this type pain then this is just one more aspect of IH that is not in the scientific reports. Frustrating. Thanks for your help.

MM3

I wake up some mornings feeling like I've been hit by a truck. I have no idea if it's the IIH or something else.

I had severe bone pain. That was from metabolic acidosis brought on by the diamox. If you think that might be your problem it's an easy blood test to see your potassium and CO2 levels.

i was recently diagnosed with rumatourd arthritis because of fluid in my joints. I asked the doc if he thought it had anything to do with my PTC he said there was no way that could be possible. Now I have to give myself a shot in the thigh every week to relieve the pain and fluid. I knew there was a connection. I had great 10 months of no head ache no pain. Now this shunt has failed, but this time I know there is something that works for me.

Im so so so sorry for the loss of your primary Doc. I have the same relationship with my Primary Doc. He stays with you, answers all your questions makes sure your ok. He is the one that pulled some strings and got me into Mayo in 2 weeks. when I called to make an apt I was told apts were 6 weeks out, I do not know what I would do without him. I understand what a loss that is now a days docs treat everyone as a number. Very hard to find a doc that actually cares,

I deffinately have bone pain, that's the best way to describe it. My Dr. suggested massages. I wish I could afford to get them all the time!

I get all of the above ! have though for 3 years but only have been DX'ed with IH for 14 months.LP shunt has been in for 9 months.

I've asked my Neuro Surgeon about this pain if my IH could be causing this he insist that by no means it is caused by IH.

SO ... I've asked are you sure ? HE's sure hmmm...

hey mm3,

sorry we didnt finish our chat the other night, you going to the IHRF conf in OH?

Send me a msg on FB and let me know how you are doing.