Hi-I’m having a horrible day dealing with nerve pain then cause weakness. Intense burning, electric pain-pins and needling all over my body. A month ago, my Neuro increased my Gabapentin to deal w/ this extreme nerve pain, plus another medicine I had adjusted recently.
But don’t understand how I can have more days like this lately. Yesterday was a good day with less pain and fatigue and even went on recumbent bike in morning. Now today, I’m suffering again with burning pain all over back, spine, arms, legs and don’t understand why. On days like today, this pain makes me feel like I’m dying.
Can anyone relate to this intensity of nerve pain?
Thanks for your help, Nikki
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nicoly3467
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I have pain in the bottom of my feet that's the only place I have pain ! take the same medicine for the pain twice a day, What helps me with the pain is at night wearing a compression stockings when I am sleeping I have experimented and found out I do need to wear them every night if I start having pain during the day I just put them on for a few hours help me with the pain when when I have the pain it feels like I am walking on needles. Not saying this would help you it dose for me no doctor told me to do it just try it one night.
Thank you, I also have long compression socks that I wear during day, but never did during sleep. I’ll try it tonight and see if it helps pain all over body tomorrow-hope something works better soon.
Sorry your going through this, nicoly3467...past two nights my neuropathy was just through the roof in my feet! I neglected to take my medical marijuana in the mornings both days, so that likely would have helped with pain management, instead of just taking the night time dose. But, I simply forgot...it’s such an ungodly pain! Hope you get it under control soon. 🙏🏻🌺
Hi nicoly3467 ...I have neuropathy in both lower legs and my feet and also take Gabapentin for it. Sometimes I forget one of my doses, (I take it throughout the day), and I pay the price by the time I'm ready to sleep. If I have too much activity one day, I will feel more neuropathy the next day. The hardest part about it is I can be having a great day and not feel like I'm overdoing it but then the next day will have more pain than usual.
Hope you figure it out soon so you get some relief!
Thanks, that’s what my predicament is. Yesterday had a much better day and today I’m lying down all day in severe pain, can’t do anything and not even able to read or watch tv when it’s like this. I went out w/ my family last Sat (first time out with them in a while) for 1/2 the day and maybe pushed it longer than I should have-then Sun & Mon I’m lying down w/ same terrible burning pain all over body and more fatigue. Usually for past few years, when I go out for a day and busy. I’ll have to lie down next day almost whole day cuz of more fatigue with a bit more sore pain, but this takes the cake-can’t make sense of it why so bad for many months. It’s so frustrating!
That sounds horrendous u poor thing I don’t get a lot of pain but when I do it’s both my legs. Stretches help a lot and I’m also on Gabapentin which also help, wish I could give u a hug xxxxxxx
so sorry about your pain,you are not alone,I have figured out for me the pain comes when I do something that's usually difficult after a couple of days of doing nothing.I can't take gabapentin I had a bad reaction to it. I hold on to the thought ,everyday is different,and this too shall pass,hang in there
Just on my left side of my ribs. I am used to this but now I also get all over pain. I can feel the pain traveling along my body. I take my hydro morphine and diasapam
I take it almost daily. I need relief as it can drive you crazy.
hey nicoly3467, sorry you're having to suffer thru the neuropathy...really sucks, the constant, never-ending reminder that you have nerves - of steel.
Have you tried EBN5? It has helped me in the past when nothing else worked. It is nothing more than vitamins and you can get from EB Medical online. Hope this helps
I get the same types of pain you are describing. It is completely awful! On those days I think I can't take the rest of my life like that. Then, after about 2 1/2 days it settles down to "my normal". I am on Gabapentin as well, and my dr doubled the dosage just last week. Not seeing much if any difference since the increase. As difficult as those days are, my better days feel like a gift that I am very thankful for.
Hi! I was once an I can do anything type without worrying about consequences. I am still a little too confident for my own good but I’ll tell you what...I’ve found some things that have helped me with grief I experience due to the disease. *side note* I bring up grief because it’s one of my stressors and stress always sets me off. Stress can be big or little. Example: right now I’m driving a car that will quit on me at any moment and I live in the woods...alone. Little stress? I have been feeling like I haven’t had any real time to myself because I’ve been keeping busy and when I do get home (no matter the time) all I want to do is rest. So, I’m getting frustrated with myself for not doing my dishes or cleaning the bathroom. Really it isn’t that big of a deal but in MS terms it feels huge.
Anyway, back to your questions. I started seeing a therapist even though I felt like I didn’t really need one. Low and behold it has made me think more logically about some of the things that cause stress and therefore set off MS symptoms. I also had blood work done to check my vitamin levels and found that I’m low in Vit D...go firgure (best absorbed with Calcium as a catalyst). I’m low in Zinc too (best for absorption is zinc orotate). I take Folic Acid and L-Lysine to help with tissue strengths (such as myelin). I’ve also been making myself eat foods that are anti inflammatory and cut ones that are. All of this along with a little bit of walking and or just sitting in nature has helped with my random nerve issues and lack of sleep. Geesh, did you think I’d ever get to the point? I hate upping my gabapentin because then I feel like a zombie who is still experiencing the yucks. I need to feel like part of the world to make all of this worth it. Self care goes a long way. I Can really notice the difference in how I feel otherwise I wouldn’t be wasting your time with this message.
Hi Nikki, I pray you have more good days coming. I take Flexiril for pain and have pins and needles too. Sometimes I have noticed if I don't drink enough water, everything seems to hurt; neur told me hydration is important. Feel better soon.
Absolutely! I get this kind of pain all the time. When I explain it to my Dr. he looks puzzled. I always think to myself, don't others report the same symptoms? I belong to a support group but when I explain I have extreme nerve pain, they don't seem to relate to it. I can only describe it as melting from the inside out. Feels like I'm burning in hell. Wish my hubby could feel it for just a minute. No one knows how unbearable it is.
Forgot to mention, Gabapentin only made me feel worse. I have nothing to relieve the pain. I roll up into a fetal position and put an ice pack on the back of my neck. Or sometimes I put the ice pack on the bottom of my spine. I also take valium, doesn't help much, makes me a little sleepy. Plus medical marijuana does nothing to help the pain.
Have you had a complete metabolic panel done recently?
I often find myself in worse pain after pushing it. Lately being around people in general has been exhausting. Unfortunately, it’s residual from the Tysabri I was on and then Topamax...which I had to stop. When I’m tired or stressed the nerve pain is at its worst.
I usually take the max of b vitamins (liquid under the tongue or an injection because it absorbs into the system better) and take the max of magnesium at night too. Seems to help. Especially if you don’t feel like adding anymore pharmaceuticals.
Make sure to rest! Self care is THE most important.
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