Hi, I am new here.I am 41 years old and have ppms. My legs hurt so bad sometimes I want to cry. I take Tramadol, Flexeril, and Neurotin for pain, which sometimes just dont help. I just wanted to know if other people have such intense pain in their legs and if so how they manage it.
Hi and welcome to the forum here - this is a great community and full of very MS smart people. I'm sorry to hear that you have this intense pain. I know we have a few people here with significant pain and I hope they will pass through and add to this conversation.
Cymbalta is being used for pain and this might be worth a try.
If it is spasticity that is causing the pain, you might ask about botox treatments. It has been approved for upper body spasticity and doctors are using it off label for legs.
Thank you for the information. I will ask my doctor about. I am unsure what kind of pain it is. I have a pain that feels like hot lava running down the back of my legs and I also have pain like a coat hanger being twisted around deep in my legs.Is this the way spasticity feels?
Hi, and welcome to the forum! I'm sorry about the severe pain you are having. You are on a fairly lightweight pain regimen, if I might comment.
You are on a potent pain med in Tramadol, but most of the direct pain meds are notoriously ineffective on nerve pain, which is what it sounds like you are. The Neurontin (gabapentin) is used for nerve pain, but sometimes it is not effective and the doctors need to push the dose way up and/or add other meds.
What dose of Neurontin are you on? The max dose is 3600mg per day, but some docs go even higher with careful monitoring.
If the pain is keeping you from sleeping at night it is often helpful to add something like Amitriptyline just at night. This is an old anti-depressant which has sleepiness as a side effrect, but it has been shown that a small dose at bedtime aids better sleep and has a lingering pain-reliving effect into the day. Beginning dose is about 10mg which can be raised very slowly to about 25mg. You might talk to your doc about this.
Are you being managed by a pain-management specialist? They are better trained at making the slow changes that are needed to keep side effects to a minimum. You would need a pain doc who is adept at working with severe pain, like cancer patients have, not the kind that work to control addiction.
There are two articles that we have here written by a very smart pain doc.
I suffer from unrelenting leg pain. Quix was correct that you are on "lightweight" pain regimen. Mine is Klonopin, nortriptyline (cousin to the amitriptyline Quix mentioned), gabapentin,Cymbalta and Trileptal which does double duty for my trigeminal neuralgia and leg pain.
Currently, as of yesterday at my impromptu neuro appt after he heard me on the phone, we are weaning off all but the most necessary meds and I'm going to Pain Management doc #2.
My neuro also told me that I could use heat sparingly to my legs to help relieve cramping. Since heat is notorious for causing MS exacerbations, I will apply warm packs to my greatest points of pain before bed. I also go to PT where I have a fantastic therapist who is very neuro literate (very important!) The days I have PT are the ones I have the best night's sleep.
hi I too have severe leg pains due to neuropathy I am currently taking lyrica 300mg three times a day. It no longer is helping so I have to find another drug to help out. Have you been tested for neuropathy? best of luck
I also have leg pain, sometimes it makes me cry too. I have been on neurontin then switched to lyrica. It helps take the edge off so that it is dealable, well most of the time. I also have muscle relaxers I take for the spasms.
I have had the pain going on for 2 years now, I would like to say that you get use to it, but you really don't. Well you get use to the achy feeling but the burning is the hardest part to deal with. Nothing like feeling like you are on fire.
I have even gotten a towel, got it wet with cold water and put it in a garbage bag to wrap it around my leg. Well my bf did this for me cause i thought I was dying. It helped to ease the pain but made me real cold, but I would rather be cold than to feel like I am on fire.
I finally got fed up with unremitting pain in my legs and lower back and headed off to the pain doc. We tried injections in the cervical region and lumbar spine but it didn't make any difference in my pain with is mainly in my lower areas. I know this pain has been coming on for years, so it might not be totally an MS thing but the result of over doing everything all my life like sports, work, hobbies. Sigh. Now the MS with its spasticity has me walking funny.... a good way to unbalance ones bones.
Finally we tried injections (cortisone and a caine drug I think) in the sacroiliac joint and low and behold it worked. I had two days of no leg pain, no pelvic pain, no hip or lower back pain. My walking improved to normal!!! Instead of hobbling across the living room and having to sit down from standing position every 10 minutes to recover, I went to a hobby store, a big one, and walked all over the store. For an hour. No pain. It was a joyous occasion. Then I went to the drug store and shopped there for 30 minutes or so. no problems.
However the treatment wore off after 2 days and now a week later I am back where I started. But the good thing is we know where the problem is coming from. I can go have a nerve ablation that burns the nerves and that can take care of the pain for up to 2 years the pain doc says. The nerves (sensory) grow back eventually and the procedure might have to be repeated. I will for sure do it to regain some mobility! I am so tired of more and more drugs, more and more brain fog.. Without the pain I could wean off the fentanyl patch and the pain pills and just be down to the neurontin/gabapentin for nerve pain in my arms.
I have been away for a while and just skimming thru some posts and yours caught my attention because there aren't very many people with PPMS. I am Debbie and I have PPMS was diagnosed in 2008 and had to leave work as a medical office mamager due to cognative deficits. I have also been diagnosed with Fibromyalgia, osteoarthritis, and hashimoto's disease all autoammune diseases. I have recently had gastric bypass surgery and have shed 83 lbs. I am currently taking Lyrica 100mg 3 times a day and celebrex 200mg twice a day. I was on Gabapentin 900mg three times a day but decided to discontinue after by bypass surgery to see if maybe the weight loss would help me decrease my medications. I do have balance issues and fall occasionaly due to by legs just giving out (scares the hell out of my husband). I like to touch base with others with PPMS to see if things are somewhat similar. Nice to meet you :)
~live as if all your dreams came true~
Thanks to all the advice. I didn't realize that this was bumped. I think I need to talk to my neuro and tell her that I need something more also or perhaps suggest the pain clinic. My problem is I have to draw ssd for two years before I can get medicare. It seems to me to be backward but at least i can compensate and draw some money each month considering I no longer can work. What I am trying to say is I have no insurance therefore I can't afford much. Thanks again. I also really appreciate this forum.
I posted on your thread back in September just before going to the pain management doc. The magic of pain docs is SO underrated. My regimen started with spheno-palatine blocks (details of this can be found in another thread but deal with trigeminal neuralgia).
After those blocks proved totally successful, we venture into the ketamine infusions. I had 3 infusions, each one week a part and each with a slightly higher dose. My leg pain is virtually gone after 3+ years of suffering. I was on 12 meds! We are in the process of weaning off some of the drugs and spacing out the infusions.
I still haven't posted on the remaining treatments but I will when the rest of my medical issues are handled.I saw the pain doc today. My pain level, while in a flare was a 2/10. My initial pain levels were 6-8/10 I believe. The 3rd infusion gave 6 pain free days!! The lingering aching is nothing compared to the awful pain I had previously. My leg , notice not plural as the left leg is pain free, just aches like I have overdone a long walk. My meds take care of the remaining pain.
I hope you can find some relief with your pain doc.
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