RLS

[agapepilgrim]

Help! New spt of restless leg syndrome! Is it Tecfidera?? Has it years ago but 1 Xanax took care of it. Neuro took my Xanax away and gave me Valium and it has no affect. I take potassium for it and that helped for 6 months. Using aromatherapy, no help. 3rd night of it I am climbing the walls! Tecfidera or MS??

[jimeka]

agapepilgrim oh do I know what you are going through. Rls, I survived 30+ years on 2 hours sleep a night and 3 children. I wore a figure of 8 in my carpet, I couldn't sit and enjoy a meal with anyone, I had to keep moving all the time. The doctors used to prescribe drugs that only made it worse, which meant walking continuously and leaning against a wall in case you may fall. It's awful. Then they gave me mirapex or pramipexole, just 1 tablet, after all those years, peace, until I hit augmentation and it started off again. Then I had a hysterectomy and again it was relieved but now my tablet lasts 22/23 hours so a lot of walking/stumbling is done in those last 2 hours. Again can't sit, can't lay down, and now it's harder with the walker. One day they will find a cure for Rls and ms but not in my lifetime. A soak in the bath used to work for me, it gave me a break but once you get out of the bath, it started again. I found rubbing magnesium oil into my calves helped at night. Sorry I have rambled, just to let you know, I understand, big hug, blessings Jimeka 🤗 🙏

[agapepilgrim in reply to jimeka]

jimeka oh I don’t know what I would do without you, Sue!! (Do I have that right?) we could probably spend hours on the phone! I have been taking 800 mg magnesium every night and that stopped them the past 4 years. And yes, a bath of Epsom salts and essential oil totally relieves them, but by bedtime, in bed for half hour, back again. And it’s probably the tension of the legs and lack of sleep but my migraine started back yesterday morning! Finally, put together some oils and rubbed on base of skull and drank herbal tea and that stopped for now. I do not want to go back on Topamax, which I was taking 100 mg to prevent them. I went to GI specialist yesterday I gave him a list of current meds and list of ones I stopped 8/1. I could not believe it!! 17 medications I would be on if I had not stopped 10 of them. That’s enough to give anyone dementia at 70, much less me with MS and progressing right brain damage. Not sure what started the RLS unless it is cause my neck pain has flared back up to about a level 8. Late last night I was ready to go to ER for relief from migraine and RLS, but just too much trouble! Started listening to devotions on my phone. You know, the Bible contains a lot of people who suffered. It is humbling unless I am angry. But I will try rubbing essential oils on my legs- lots of it! And my neck again since it’s coming back. Thanks for sharing. I am not alone!!! For so many years I thought my pain was because of mistakes I made, cause that’s what my parents drilled into me. Now I read all your stories and I KNOW it’s not my fault and God isn’t mad at me (brainwashed). You have done so much to help my peace of mind!

[Jesmcd2 CommunityAmbassador in reply to agapepilgrim]

😱 💕 feel better soon agapepilgrim my your angels watch over you always!💕

J 🌠🎃

[erash in reply to jimeka]

agapepilgrim

As jimeka said and if u haven't tried:

Also Requip, magnesium oral, clonazepam, gabapentin

Have ferritin level checked

Be sure you aren't on any meds that might cause

Lidoderm patch helps me a little

I have rls X 19 yrs old but from what I've read not as bad as Jimeka

Hope u get relief soon

[agapepilgrim in reply to erash]

erash thanks. Allergic to gabapentin and clonazepam. Taking 800 mg of magnesium which was controlling it last 6 years, before that Xanax. Neuro took away Xanax and gave me Valium but 31st gonna ask tone switched back. Increasing my magnesium to 1200 mg. Had them before they had a name. My mother called them growing pains back then and said they would eventually stop. They didn’t! I was just born with bad health DNA. Lol! Dx with muscle spasms (severe pain) when I was 8 and first trip to chiropractor was age 5 when I couldn’t move my neck. Went for years because had fracture around 2 but only found that out with 3 Tesla contrast MRI last year. Most chiropractors thru the years would just tell me I had been in bad car wreck. Looking back I guess all my life either my back or neck hurt every day all my life! Only time I remember all pain gone was synthetic codeine in IV when in ER with “raging UTI. Lol I thought this was what a new body will feel like! Really need to get up and cooky Husband a meal. He likes big meal around one cause he naps from 3-6. With 2 strokes (no lasting affects blessedly and 80 yrs old I want to give him good nutrition instead of his sandwiches if o don’t cook. Usually cook a batch of meals on a good day, but been down since last Thursday with severe pain. My MS neuro wouldn’t send me to pain clinic (said I would get addicted-at 71 who cares!). Anyway Botox neurologist made appt for me at pain clinic. Lord willing, I will endure til 11/4. Last pain clinic put me on methadone, Knut confusion affects. Well, I’m confused half the time anyway, so I hope he puts me on it!God give you a good day!

[erash in reply to agapepilgrim]

agapepilgrim

So agree...too much emphasis on addiction and neglect for pain management.

Me too. My mom said I had horrible growing pains when I was a kid...hmmm...?

[agapepilgrim in reply to erash]

@erash someday “they” will discover MS in childhood!!!RLS I guess could be similar to spasticity or spasms. Migraine much worse tonight. Discovered appt with pain clinic dr is not in network. Gotta find another. Neither was the JC virus test was covered. Will get big bill for that. Disgusted with insurance.

[Doubled51 in reply to agapepilgrim]

agapepilgrim I agree with you call me addicted or whatever else you want. Just please call me out of pain.

Donnie

[greaterexp]

I’m praying you get some peace in those legs.

[grammyshay]

I have been on meds for RLS for so many years. My neuro and I have found that a 100 mg of Gabapentin at supper and a 100 mg at bedtime seem to work for me now.

[agapepilgrim in reply to grammyshay]

Grannygh thanks. Unfortunately I am allergic to gabapentin, causes complete loss of bladder control. Probably my flare up of RLS and migraines are allergic reaction to Tecfidera. Had to stop the other 2 DMTs dueto allergic reactions. Because of all my dx and allergies, I found myself last month on 17 medications, with increasing damage to brain. I went off 10 of them. One was for migraines. But I can’t afford all this’s meds anymore. Tecfidera only one with financial aid. Seems like my immune system is so low I can’t take any DMTs since they eWorld against immune system also. Norco 7.5 doesn’t phase the pain. Chiropractor I went to for years after latest MRI said he is not touching it anymore. Could break it again! He said medical marijuana only thing will ease my pain, but not legal in KY and saying it never will be! cND oil suggested but too expensive for my SS budget. Did tryixturw of essential oils in legs and greatly helped last night. But now have ice pack on head for morning. Gots research and see which one of remaining 7 meds drs have me on cause migraines. migraines. May God help us all.

[grammyshay]

I am so sorry the for the struggles that you have been experiencing. Praying that you receive answers soon.