Hi, This is the first time I have used the Forum and may not have done it right so if anyone has any useful tips please let me know!
I would love to know if anyone else gets, has experienced or has any advice about “pain” / burning in my leg. It affects just my left leg which is the leg that became weak and started dragging first. It only really happens at night or when I lie down. I get a very warm burning feeling, like a dragging feeling, trying to get out of my body that I can only vaguely compare to period pain but this is not cramp. Its not sharp but can feel very intense and at its worst it makes me feel sick. It affects my hip or knee or ankle randomly, but I suffer with this every night, I cant get to sleep and when I do sleep it wakes me frequently during the night.
As back ground info, I am 54 and was given a “working diagnosis” of Primary Progressive MS in Feb 2011. When running or hillwalking I started dragging my left leg and also noticed cognitive changes. I explain it to people as my brain being a motorway -when it gets congested everything slows down, the traffic stops, the bread cant be delivered to the bakery and the coal cant get to the people who need it - instead it is delivered to the wrong place or cant get through at all. I have to wait until the motorway congestion eases then the traffic can get through again, sometimes quickly sometimes slowly. Interestingly the most often cause of congestion on the motorway is my NHS job and the pressures there, also when stress at home gets worse, maybe after an argument. (My partner is finding it hard to accept I am not the person I was and say things wrong, cant remember or act differently) (Any ideas on that one also gratefully recieved!) Ironically I manage other activities / situations ok.
I have been very slow and reluctant to look at MS support, not because I dont care about other people (I do too much!) but because I want to just deal with how I am as best I can and live as normally as possible until I need more info / help. I have an MS nurse / support numbe, she is great but now am not newly diagnosed they are busy helping other people more.
So, if anyone has any info / advice about my feelings / burning “pain” in my leg I would love to hear it.
Hi Anna welcome, you are talking about me we are the same age and I am suffering with pain / burning in my legs, it is bad at night contactly waking me up having to keep turning over. I was finally diagnosed in July with SPMS after 14 months of tests. Anyway my MS nurse is excellent, she is trying different meds to help, at the moment at night take 50g Amitriptylin, 50g Pregabalin and 2x30g/500g , helps me sleep for about 3 hours but then the pain starts again, but we are working on it hopefully will get it right soon. Good luck and hope to be in contact soon with an answer. Deborah
Hi Anna and welcome to the gang! Not a gang you would have chosen I know… but we are a good bunch on here… very supportive and friendly and always pleased to have a new member. The burning sensations etc could be possibly helped by meds. Are you on anything? As Deborah pointed out, Amitriptyline (which is an anti depressive but in low doses helps with neuro pain and sensations), Gabapentin and Pregabalin (both anti epileptics but also help with MS) are all worth giving a try. Your GP or neuro can prescribe. The above meds can also help you sleep. In meantime, try one paracetamol plus one ibuprofin… it’s a good combo that might help (no more than 3 times a day). Have you looked into LDN? (Low dose neltrexone). Look for older posts on here (some quite recently). Also look at website The LDN Research Trust. I love how you explain MS… it’s a very good way to describe it and if you don’t mind I’ll pinch it and use it myself. But it doesn’t seem to be getting through to your partner. It is very difficult for people without MS to have any idea what we struggle with and perhaps partners feel it the worse as it does change us so much. The main thing is to keep the communication going without making all the communication about MS! Bit of a juggling act. There are some great brochures available both on this site and on the MS Trust site that can help explain some of the problems we live with. Understanding what’s causing us to behave differently can be a huge help. If things are really difficult, might be worth considering relationship counselling. I can understand why you wanted to deal with it yourself but I think (I hope) you will find it’s actually easier once you use a forum such as this. In truth, it is only other people with MS who can really understand what a strange and difficult condition this is. So I hope you will come back and see us some more. Btw… being able to handle some situation ok and floundering at others is very MS. See you again soon, Pat xx (can’t use smilies on this site on ipad but imagine a big smiley here!)
Hi. I get intense pain in my legs too. Yours also sounds like nerve pain and I needed meds specifically for nerve pain. You need to see your gp or Neuro. Gabapentin and Amitriptyline with regular Paracetamol definitely help. You don’t need to suffer, life’s unpleasant enough with ms, pain definitely doesn’t allow quality of life. There is treatment available, please speak to them. My life has improved so much since I got an effective regime. Good luck xx
Hi Anna, It does sound like nerve pain…I take gabapentin and find it very effective. Hope your nurse or Dr can sort it out soon for you. It’s so hard for people to understand that changes in our personality are simply beyond our control. I do think Pats suggestion of getting information from the MS society and the MSTrust for your partner to read is the best option. I hope you come back on to this forum because it’s the one place where you’ll find a really kind group of people who really will understand what you’re going through . The support is amazing and can give you such a boost when things look bleak Hope all goes well for you Best wishes, Nina x
Thank you for the replies I have received and the friendliness. I went to my GP and have been prescribed Amitryptilline. I took 10 mg a night for 3 nights, slept well but the drowsiness the next day and nausea put me off continuing. I fell asleep several times one day! It seems a bit of a catch 22 sitution.
I had a copy of the report from the cognitive studies I had done at the JR - interesting reading and gave some rationale or a sort of label for some things I now find difficult / frustrating.
I also found the sleepiness unbearable in the beginning, but I agree, it gets better. I take it at about 7pm now so I can wake up feeling human. Please give it a chance, it’s worth it to get rid of the pain…
I agree the tiredness does get better, but take it early in the evening, as this helps with the groggy feeling in the morning. Also if you increase it, do it very slowly.
Hi Anna, Everyone is quite right…you will get less sleepy during the day eventually…especially if you take them early in the evening. If you find it doesn’t improve please go back and talk to them again…maybe you could try gabapentin…I find it doesn’t make me sleepy…although I believe it does for some people . Good luck and best wishes, Nina x