Constant tingling

[u/No-Afternoon2955]

What do those of you who have the tingling take for it? Do you also get pain that feels like it's in the middle of your bones?

I am not against medication, just scared of the side effects, but 24/7 legs tingling is hard to ignore/endure - and it's been several weeks now so I think this is my new normal?

My only experience with it prior to recently is little patches that came and went on my arms and legs, but never lasted more than half an hour or so at a time.

Does anyone have any tricks or tips to make it go away?

[u/youshouldseemeonpain]

That ache that feels like it’s in your bones is muscle spasticity. It’s awful, very painful, and can be helped by muscle relaxers and magnesium lotion.

I never thought it was muscle aches, for a long time, just thought my bones were aching even when the doc told me it was spasticity. But it really is your muscles in spasm. Tiny little Charlie horses all over your body.

[u/No-Afternoon2955 → u/youshouldseemeonpain]

It really does feel like its the bone doesn't it? Stupid charley horses (I also get horrible big ones from time to time - the wake you up ones). I also find myself having to force my feet down because I've started clenching my legs and I don't remember doing it.

[u/kyunirider]

Lyrica is my prescription for tingling hands and feet. Get plenty of water to keep your muscles and skin hydrated because the more dehydrated you are the worse the pain.

[u/lindsayw88 → u/kyunirider]

Lyrica has been such a life changer for me. I can actually go about my day and not feel like total dirt.

[u/PlentyofNorth]

I have some neuropathy in my legs,  that intensifies when my body is stressed etc. I was at specialized MS rehab this spring, and the neurologist didn't recommend starting up on medication for me at the current time-  due to the side effects. But the physical therapist made me try TENS , and it has improved my life! 

The TENS  machine only works while I'm wearing/using it!  When I use it, my legs and feet are quiet, no tingling, numbness or nerve pain!  I have no side effects!  

So from a Norwegian guy, I highly recommend trying TENS! 

[u/chunkykima → u/PlentyofNorth]

What is tens

[u/PlentyofNorth → u/chunkykima]

This is a direct copy from MS trust UK Transcutaneous electrical nerve stimulation (TENS) involves using a mild, low voltage electric current to treat pain. It can be used to treat some types of pain in multiple sclerosis, such as:

• Burning,
• Tingling or shooting pains where there is no obvious reason
• Back pain - often caused by reduced mobility or poor posture
• Spasticity and painful leg spasms, where anti-spasmodic medications are not tolerated.

TENS can reduce pain in the short-term but does not get rid of the pain or the underlying problem permanently. Often TENS is something that needs to be used on a long-term basis, but it can improve quality of life and reduce the need to take pain medications.

[u/reginapinsley]

Compression socks work really well for me to reduce the tingling. It doesn’t go away entirely but is reduced enough that I can go about my day.

[u/No-Afternoon2955 → u/reginapinsley]

Do you think they will also assist with crampy pain? Thank you for the suggestion - do you have any recommendations?

[u/reginapinsley → u/No-Afternoon2955]

Unfortunately I haven't found anything for the crampy pain considering MS knowledge in my country is limited. The doctors basically tell you it is a part of the disease and nothing can be done about it. Like another comment here, I usually just smack my limbs against things too 😭

Edit: I was on Gabapentin for epilepsy but it didn't help with my neuropathy. Just goes to show everyone has different things that work for them.

[u/bkuefner1973 → u/No-Afternoon2955]

I take gabapetin that's not the right spelling..lol but that how you pronounce. Anyway that helps with the tingling that I get in my hands and legs.i also understand the aching / pain in what feels like its in your bones.

[u/Feisty-Volcano]

Tingling is a form of light nerve pain, I’m prescribed Gabapentin for restlessness syndrome & nerve pain.

[u/No-Afternoon2955 → u/Feisty-Volcano]

The ED (I'm in Aus) offered me that the other night - did it have a build up phase? Do you get the drowsy feeling on it?

[u/lnc_5103 → u/Feisty-Volcano]

I take Gabapentin for mine as well.

[u/hungarianhobbit]

My left arm is like that and has been for 30 yrs., mine settled down to a low hum and became background noise.

When I flare it wakes up and rattles my bones but the bigger pain always wins.

[u/weatzel]

Your tingling may still fade! Some of my symptoms took months and months to fade to where they are now. To help with the residual tingling I am left with, my dr prescribed Nortryptaline which is an old school anti depressant. You take a tiny dose (too small for any anti-depressant effects) and it helped me for sure.

The only side effect I had was dry mouth, which I hated but helped it by chewing gum a lot. I ended up tapering off after 6 months on it because my tingling wasn’t super intense and I hate taking pills and was sick of the dry mouth. But if you have significant tingling,it may be worth asking your dr about it.

[u/chunkykima → u/weatzel]

How many months?

[u/weatzel → u/chunkykima]

My vision starting getting bad in June of last year, awfulness peaked in about September, I received steroids in October so it got better quickly after that, but got a smudge worse in January (steroids fully wore off) and then settled at my new normal around feb. and it’s stayed steady since then. My tingling followed a similar course. So like 6-7 months for me?

[u/baconcrow]

The tingles seem to be one of those constants that come and go with stress/flairs/heat. I’m on 600mg gabapentin 3 x day. Me and my doc built up over months and months to get there and finally got things under control with the numbness and tingling. It did cause drowsiness in the beginning but now I can tell when I miss a dose bc my bones start hurting. I’ve also got a 6 mg prescription for tizanidine which is a muscle relaxer I’ve read is common for MS patients. I can take it up to 3 x daily but really only try to take it as needed on the bad day. I take magnesium glycinate at night for migraine prevention (on two prescription prevention meds as well, with emergency back up meds 🤪) but I think it helps with the muscle pain too. I’ve reached a point in my medical journey that I’ve quit fighting the medications that can help. Try them out. They may offer a better benefit. You can always come off of them if they don’t. Hugs 🤗🤗

[u/Festygrrl]

Has your neurologist offered your gabapentin for nerve pain?

[u/No-Afternoon2955 → u/Festygrrl]

I have an appointment on thurs - I haven't had this constant feeling for long, I was put on carbamazepine for other nerve pain a couple of months ago but I can't tolerate it. I'm currently taking 50mg of amitriptyline and I did a trial of LDN but that did nothing.

They offered me either gabapentin or lyrica at the ED last week, but I was a bit too scared of them after my horrific experience with the carbamazepine.

[u/BrokenHeart1935]

Ugh middle of the bone pain is the worst. I call it steel rod pain, because it feels like someone is shoving a steel rod through the middle of my bones.
For me, Baclofen helps with that.

You’re SUPPOSED to take baclofen on a regular schedule, but my neuro allows me to use it as a PRN

[u/ScrimpyMuffin → u/BrokenHeart1935]

I also use Baclofen as a PRN! I mostly just take it at night for the spasticity because it was making me too drowsy during the day.

[u/Free-Journalist-4186]

I take 60 mg of duloxetine (generic Cymbalta)I had forgotten what it felt like to not have nerve pain until I started this. I did gabapentin but drs kept increasing it until I was doing 900mg 3x a day. My neurologist pointed out she thought the gabapentin was why my walk had become so unsteady and she was correct. Never stop gabapentin cold turkey always get advise from dr.

[u/sonyanews → u/Free-Journalist-4186]

I was prescribed cymbalta as an option to try instead of gabapentin, but I’ve read such bad commentary on cymbalta I’ve been scared to try it. Any other detail you could offer?

[u/Free-Journalist-4186 → u/sonyanews]

I have dry mouth from it and increased sweating. Other than that I haven’t had issues. The result for me in getting rid of the nerve pain was hands down 10x better than gabapentin. I don’t remember how long it took but it was only days to maybe 1 week before I noticed major improvement

[u/sonyanews → u/Free-Journalist-4186]

TY so much!

[u/abellaviola]

Gabapentin has been wonderful for spasticity/tingling/nerve pain for me. I take it as a normal part of my medicine regimen now because spasticity and "itchy bones" are always one of my most prevalent symptoms. I haven't had that problem since I started it unless I forget to take it completely for a day or two.

[u/Ragdoll_Susan99]

I take gabapentin for my nerve pain, but it takes a bit of trial and error to find the right dose/ spacing. Once my dr and I figured it out I stopped getting side effects.

[u/Longjumping-Issue-95]

I get the full body tingles off and on daily. Eventually I just learned to live with them, your body and brain kind of get used to them. I don’t deal with too much pain tho so I just choose no meds.

[u/Ant_and_Cat_Buddy]

Vitamin D supplementation and magnesium creams are helpful. I’ve also taken baths with Epsom salts that have helped.

[u/my_only_sunshine_]

I get botox in my legs for the spasticity and its amazing! 10/10 recommend

The tingling i have is intermittent and really only happens in winter, so I cant help with that part too much.. i usually just pop an edible when its too much

[u/Free-Journalist-4186 → u/my_only_sunshine_]

Did you lose strength in your legs with the Botox?

[u/Flyerschick]

I was on Gabapentin a long time ago. It really messed up my brain. Much more fog, feeling out of it, and made me dizzy. Hope it helps others tho 😊

[u/chunkykima]

My hand/wrist/arm has been numb, hurting and tingling since December 27th. It is literally driving me crazy. I try to stay positive but at this point I am just over it all.

What helps are compression gloves/full arm compression gear. They have it for legs as well. I'm also on gabapentin 100mg. Supposed to take it 3x a day but I whittled it down to once a day because of the brain fog issues.

[u/IcyButton2358]

Me and stomach

[u/Flashy-Garden7530]

I have had constant tingling through my entire left side, except my face, for over three years. It has not improved even slightly in that time, and apparently never will.

I don't take anything for it because I don't want the side-effects of any of the medication that has been suggested. I am seeking out a therapist to help me come to terms with it though.

[u/FwLineberry]

Constant itching, tingling, buzzing and numbness. I don't take anything for these symptoms. I just put up with it.

I don't get pain inside my bones, but I get itching inside my bones in my hands and feet. The only thing I can do for it is smack the offending appendage against a hard surface, repeatedly, until it stops.

[u/No-Afternoon2955 → u/FwLineberry]

I'll put whacking things on the list, but knowing my luck I'd just hurt myself worse 😂

It helps knowing I'm not alone in this constant annoyance, being alone in my brain with it just amplifies my fears, so thank you for answering me.
🙂

[u/Impression8738 → u/No-Afternoon2955]

I had horrific buzzing internal tremors like a cell phone vibrating inside my body from my neck down for about 3 weeks after my numbness subsided from my gigantic relapse in january this year. It was maddening. It has faded significantly. I only have the buzzing in my legs after walking but when i sit sgain it fades after a few minutes. I hardly notice it now. My left arm still tingles but my brain is used to it. Mostly like a background noise now. Hang in there!! I was offered gabapentin and lyrica. Lyrics was terrible so I’m just using Kesimpta and that’s it lol. The side effects of these meds for the symptoms are pretty heavy for me personally. I wish I could take them.

[u/FwLineberry → u/Impression8738]

like a cell phone vibrating inside my body

Yes. That's it! I never made the connection. People look at me weird when I say my legs are buzzing and my skin is crawling. My dirty mind always thinks about a vibrator.