Nerve pain

[Randyluvsrianne]

I was diagnosed with PLS a year ago. 8 months ago I started getting a burning pain in my inner thighs when crossing my legs putting on shoes. Now, it is painful when I dry off from the shower, when my legs touch the sheets in bed, when anything brushes against my legs. Standing up or sitting down hurts as well. The burning tingling pain comes on instantly and when I stop moving or touching, it is gone! It is from my knees down and only the fronts of the legs. My feet are fine. My Neuro says it is not a symptom of PLS. They have thrown various "nerve pain" meds at it, with no effect! Any ideas would be great.

[shelly21]

It sounds nerve related. Similar to restless leg syndrome also. I have another neuro pain condition that causes nerve pain and my go to drug is amitryipline. Gabapentin and pregablin didn't touch pain.

If the meds you've been given don't work then ask to be referred to a pain management clinic.

[Christopher]

I found that Amitriptyline stopped me waking with shakes and has also helped with pain that I get (I also take co-codamol and diazepam).

[Ellie]

Randyluvsrianne You could have a pinched nerve which may be helped by physio, exercise or a brace - any hope of getting an MRI to see what might be causing the problem?

[ShiftKicker]

Spasticity can cause uneven and odd posture as muscles don't respond appropriately. I've had real trouble with my lower back and hips due to a changed gait and also not being able to find an appropriate and comfortable way to sit. Because everything is unevenly tense and I can't relax some of my muscles and others are abnormally weak, it's pulled my back and hips all out of alignment and created some nerve issues. I am wondering if this is what you might be experiencing. Your doctor is right that it's not a symptom of PLS, but it's very likely a result of PLS symptoms, if that makes sense. It's unfortunate they have not recommended some sort of physical therapy to help you.

I encourage you to give some sort of physical therapy a try if possible. It may be there's a solution that includes anti-inflammatory medication and some gentle realignment/stretching for you.

All the best

[Randyluvsrianne]

Thank you for the replies. The weird thing is, I have had multiple MRI's from the brain down. Each time, they show everything from minor strokes (brain) disc problems, nerve impingement, stenosis, etc. (Lumbar and Thoracic). I even have another scheduled for this Friday! My doctors who I really like, keep saying it's not the cause and they prescribe a new medicine! I changed my insurance so I could see a respected ALS Neurologist and after 6 months of nothing and not being able to even get an appointment, I switched back to Kaiser. I have pain every day off and on. I still work out on the elliptical and do weights 3 times a week. It keeps my mind right but the pain wears on me. I have tried Gabapentin, Nortriptyline, Duloxetine and probably others. I don't want to touch Opioids and I am just kind of at a loss.

[MNDConnect]

Dear Randyluvsrianne,

PLS itself does not cause sensations such as burning, tingling, but nerve damage can. It could be that the nerves damaged by the PLS are causing this pain and when you touch the affected area, the pressure may exacerbate the pain.

This sensation should pass in time and it is worth speaking to the Neurologist about trying different nerve pain medications. I understand your reluctance to take an opioid, maybe you could discuss amitriptyline with your Neurologist as mentioned in previous replies to your post.

Kind regards
MND Connect

[Christopher]

MNDConnect Randyluvsrianne

I have to say that Amitriptyline improved my quality of life massively, it did take a few weeks to take affect.

[Ellie]

Randyluvsrianne Given your lack of success with Nortriptyline, there's probably not much point in trying Amitriptyline, as they are very similar drugs.

In fact, the body transforms Amitriptyline into Nortriptyline.

[Christopher]

I still work out on the elliptical and do weights 3 times a week.

Take heart from the fact that you are still able to work out.

Is it that you are pushing your body too much?

[Randyluvsrianne]

Hey Christopher, I don't think so, I have always been athletic and up until 3 years ago was competing in half marathons. Exercise was always a way of clearing my head and I don't push myself over my limits. It's a little crazy but, I have trouble walking and running is a thing of the past but, get me on an elliptical and I can still fly! Also, you're right, I just told my wife I have to always focus on the positive and let the negative fade into the background!

[Arcadian]

I'm super-sensitive to Amitriptyline. I was on it for about 7 years for management of Crohn’s Disease secondary symptoms (internal abdo spasms and pain). A 10mg tablet would leave me drowsy / reduced alertness for about 13 hours, with clumsiness when getting out of bed.
5mg (tablet broke in half) gave same outcome.
Consultant prescribed liquid Amitriptyline with a syringe on tongue for 2.5mg equivalent - which struck a balance between effectiveness and side effects.

I'm still quite active, but with some mild limb weakness and twitches / fasciculations on main body too.
A recent physio appointment and chat strongly recommended not to do 'too much' but to try to maintain a comfortable level of activity.

For distracting muscle aches (mainly shoulder blade areas overcompensating for arms and inner thighs feeling hollow / disconnected), I have regular (qualified) physiotherapy sports massage at a hard / intense level, that includes joint and limb extension / stretches along the lines of ballet / yoga moves, alternating the following week with a more relaxing session.
This gives a couple to few days of not feeling so bad.

Worst tasks for me are anything holding / using arms around chest area, for pain and fatigue.

Tight and aching muscles and positioning are worse in colder weather (I add baselayers)