Pain with MS

[BlueLIKER]

Hi, my name is Ann and I have been living with MS for nearly 20 years now and I have joined this forum to see if there is anyone else around the world who suffers with the type of pain that I have that may or may not be associated with my MS

I get these severe episodes of restless legs with associated dysesthesia and akathisia which over the years I have seen 3 pain specialists who cannot decide if it is pat of my MS or some other condition

I can go for weeks with no problems and no pain and then for no apparent reason on comes this acute pain episode that can last for hours

I have a cocktail of opioid medications that I start that if I can't get it to stop I have to call an ambulance to take me to hospital for IV Fentanyl

Once the pain stops I m exhausted but otherwise fine and am able to go home

It is very distressing for myself and my family and I am joining this forum to see if there is anyone else in the world who has this type of pain with or without MS

[AquaZumbaFan]

Hey Ann,

I'm glad you found this forum.. there is probably someone else here who has experienced something like you are talking about.. I got diagnosed with restless legs shortly after my diagnosis with ms back in 2001.. sometimes it's a losing battle at night. I take gabapentin and Tizadine now to help with that trouble and the spasticity.. I have visteril for really bad nights when I just need some sleep. My Fitbit watch still gives me credit for getting an aerobic workout during the night on occasion.. the aqua classes that I take 4 x per week help as well.. about 2 years ago I was having horrible issues with pain in my left thigh, knee and going into my shin.. neuro was sure it was musculoskeletal pain.. I thought from the beginning it was neurological pain plus my left leg would " give away" from time to time when I was walking without any notice like someone had just cut off my leg.. anyway, long story short I went to pt for about 4 months.. I finally saw pain management who found the trouble was at L 4 and he has done epidural injections on 2 separate occasions and I have had that terrible pain since last April.. look forward to hearing from you with your journey.

[CatsandCars]

Hi, BlueLIKER! Welcome. Unfortunately, I have no experience with the pain you are experiencing. So much of my time is spent wondering if this or that is MS related! Restless legs is definitely associated with MS, if not directly caused by it, so it wouldn't be shocking if it wa from MS, but you may never know. I am sorry for what you're going through. Having to go to the ER is disruptive and kind of traumatic, and I don't envy you. But I am glad that they are taking your pain seriously and not blowing you off, or accusing you of drug-seeking.

I hope that you get some answers!

[Cwright170994]

I have the restless legs bit too 😬 I take baclofen to help with the spasming, and I told my husband one morning it's "connecting to the Internet with dial-up" 😅 the cramps in them are horrible! So much so that I've gotten myself a massage gun to massage it out 😕

[CatsandCars in reply to Cwright170994]

That sounds more like leg cramps than restless legs syndrome? RLS involves the unbearable need to move your legs, and it wouldn't respond to baclofen. Still, it doesn't sound like fun! I'm glad that you've figured out how to manage it!

[Cwright170994 in reply to CatsandCars]

It's the random spasming of my legs to the point where I might accidentally kick my husband when we're sat close together or in bed. Kept me awake when it wasn't controlled. The cramps are a new thing. I have both, rearing up at different times during the day.

[CatsandCars in reply to Cwright170994]

Wow, sorry to hear it. Poor hubby! But he loves you so much, I'm sure he won't hold it against you! ❤️

[Cwright170994 in reply to CatsandCars]

He loves me too much, and knows he can't return me 🤣

[CatsandCars in reply to Cwright170994]

🤣🤣 Two excellent reasons!

[Peruzzot]

I have a different kind of pain that I've been dealing with for years. But, I've been going to MS seminars and some of the speakers have mentioned getting magnesium levels checked. Low levels of magnesium can trigger neuro pain, spacicity, and restless leg syndrome.

I've tried lidocaine and gabapentin in the past for my pain management. All those did for me, if anything, was just make my cog fog a lot worse. My physical therapist issued me small TENS unit that sends a small electric shock through the area. That has helped me more than anything thing else. I'm not sure that would help with what you're experiencing, but you could ask.

[CatsandCars in reply to Peruzzot]

That's very helpful. Thanks for sharing.

[Helpmeup]

Hi BlueLIKER. As I have said in other posts, pain is physically, mentally, and emotionally exhausting. Years ago, the so called experts believed that pain was not a symptom associated with M.S., but today we know better. M.S. can present with so many sensory symptoms and sometimes it's difficult to figure out what is M.S. and what may be something else going on. I have dealt with sudden onset severe pain for years. It shows up, lasts a few hours, and then disappears. I also get those horrible M.S. "hugs" which are so painful, and I feel like my ribs are being crushed. I occasionally get the restless legs at night and it's so uncomfortable. My legs just jerk around for hours until it finally subsides and I fall asleep. You are not alone in this struggle. I'm glad to hear you have found a "cocktail" of meds that helps with your acute episodes. Take care.🤗

[jackiesj]

BlueLIKER i sympathize with you. Is there anything you see as a trigger before the major episode? I hae L4 issues too and Ladocain injection seemed to help severe. Did they MRI the back? It is strange but i wear a neck pad that seems to help on the spasms thru back and legs.Trying new daily routines of rest activity nutrition is beneficial for me. Being here a big blessing...welcome.

[MarkUpnorth]

I've had M.S. for more of my life than not. Did many drugs prescribed by my M.S. neurologists for RLS and burning feet at night. I alternated these drugs too as they only helped short term. I manage it well for years now as follows: The RLS: I take a standard dose of iver the counter magnesium, actually a 1/2 dose of Magnesium Citrate and a 1/2 dose of magnesium Glycinate. Important: take not more than 2 hours before bed. I set a never ending alarm for 7pm. If you stay up late, adjust it later. I've recently read that if taken with other supplements, magnesium is "canceled out" by certain other things like zinc....typical of a multivitamin. I am on No pharmaceuticals anymore for years. GP says healthy. NEURO acknowledges thinking due to age, no more relapses. Doesn't mean no M.S. residual "gifts". I have many. The burning feet: I vape (not smoke) CBD rich hemp flower, or edibles. The vaping is 100% effective and immediate. Edibles...well they help.Hope this helps.

Check with your doctor or neuro for problems maybe with other meds.

[Irishgirl76]

Hi Ann from Australia!Would love to visit! I have chronic pain and because I don’t know where it comes from I am still searching. I would like to try medical marijuna or CBD. My legs and feet have worsened over 20 years. I tolerate pain but will stay open. I am sad to hear it’s complicated or we want you to MAINTAIN with therapy. I am very motivated but SPASTICITY REALLY HURTS.

BE WELL 😇