feeling out of the loop

[sadnsore]

Why would the MS nurse who runs the MS clinic tell me that she had never heard of MS patients feeling a lot of pain and that their legs felt l frozen? I have observed that complaint from many MS patients on various forums. Is it fear that I am saying something untrue in order to
get pain meds or what?

[kwarendorf]

Heed doublevision's words! pain caused by bad messages sent along damaged nervs will not likely respond to "normal" pain management therapies, like OTC anti-inflammatories (Motrin, Tylenol) or narcotics (Hydrocodone etc).

Also, if you are seeing an MS nurse at an MS clinic who is unaware of neuropathic/neurogenic pain, it might be time to find a new clinic :-)

Kyle

[doublevision1]

......., these are Sativex and Cesamet, and they can produce a high similar to marijuana.  For this reason these aren't first line drugs and the aforementioned ones ought to be tried first.

In any event, I would not recommend withholding important information about your symptoms for whatever reason, including worrying about what your doctor may assume about your intentions.  They cannot diagnose or treat your condition if they don't know what's going on with you.  If they presume you're shopping for drugs so you can get high based on the mere fact that you tell them you have pain, you need to find a better doctor.

[doublevision1]

Neuropthic pain is a well established symptom in MS.  It is also referred to as neuropathy / central neuropathy / neuralgia, etc.  It can present as burning, numbness, shooting, squeezing or electric jolt sensations in the limbs, trunk and face.  Some patients experience Lhermitte's Sign as painful.  This is a shock-like feeling down the spine into the legs upon forward flexion of the neck.   Trigeminal neuralgia which occurs on the face, is extremely painful.  Optic neuritis can feel like a dagger cutting into one's eyeball (I can attest to that).

With the exception of marijuana, the kinds of drugs used to treat neuropathic pain do not cause a high.  These drugs are anti-seizure meds and tricyclic antidepressants.  The aren't addictive in the sense that narcotics are.  Narcotics are not indicated for neuropathic pain because they don't address the mechanism which causes this kind of pain.  Therefore, it doesn't really make sense that a doc would assume you were fabricating pain symptoms simply to obtain drugs.  

That said, many patients with central or peripheral neuropathy find great relief from marijuana, so where it is legal (eg here in Canada, throughout the country) it is prescribed for this symptom.  There are also two synthetic drugs available here in Canada that contain cannabinoids

[byyygrace]

Sorry you're feeling this way! My legs and feet and upper arms feel like this often. For me it's hard to describe-I can't tell sometimes if I'm freezing or burning! I can best explain the feeling like if you went out in the snow and kept making snowballs with out gloves on and then went inside and ran your hands under warm water. That's the pain I most often have and am having right now!

My understanding is that it is nerve pain from MS(in my case). Gabapentin helps some, but nothing seems to take it away. Distraction (by working and walking constantly) seems to help the most! If I sit or stand in one spot, it is 10 times worse!

I hope you get some relief soon!

Blessings, Colin

[the_other_half]

I haven't gotten a diagnoses, just suspected. I do have a lot of pain. It's not constant but comes and goes throughout the day in the same spots for weeks. I haven't told my neuro about the pain for fear he would think I just want pain meds.

I have read that a lot of people DO have pain with MS.  It was originally believed that there was no pain associated with MS so maybe some still believe that? I've also noticed some doctors brush off the pain (concerns of others with MS).

I have never heard of a frozen feeling and I've done a lot of reading. To me a frozen feeling would be a painful one. I've heard of stiffness maybe she meant frozen in that context? I think the biggest downfall with MS is that everyone experiences things different so what may just be an ache to one could be severe to another.

I am avoiding telling my doctor about the pain until I find out what is going on.