FW: MS pain/LDN/Baclofen/gabapentian

[Guest guest]

Cathe I wanted to add something more. I was thinking back to those pre pump days and remembering my steady increase in spasticity and pain. It seemed to go like this the worse the spasticity, the more difficult it is to move, the less one moves the worse the pain, & the spasticity gets worse. Of course, the worse the pain gets the harder it is to move and it becomes a vicious circle. The neuros could only suggest very high doses of baclofen and physio. I could not do this as I am very allergic (especially to drugs). The pain clinic suggested the baclofen pump because it is particularly recommended for those who are sensitive/allergic because much less baclofen is required (doctors say I am getting 1/300th of the oral dose I would need), & it is very pure (no fillers). When I was in hospital after getting the pump implanted a 25 year old girl was admitted with intense pain down one side of her body which no drugs helped. At first they thought she had MS but then they realised she had Pain Syndrome and the cure for the pain? Movement. She had to start walking and the pain gradually improved, and 2 weeks later after doing physio 3 times a week her pain was down to a 2 from 8.I now realise my pain actually resulted from the spasm and the immobility created by the spasticity caused the pain to intensify. If you can try to get moving any way you can (as you have discovered it does help) and with LDN helping & halting the progression, I think you have a good chance of beating it. If this fails, do not despair, remember the pump can really help. Hi Cathe I had extreme pain/spasms and spasticity and now have a baclofen pump and the lowest dose gives me total relief from the skin pain, spasms and a lot of spasticity. I could not manage without it. BUT I got the pump before I knew about LDN and I know a lot of people get relief from pain/spasms just through taking LDN. Dr Bob Lawrence is very anti baclofen and says he has got so much relief from gabapentian that he only has to take it once a week now. So I would try that first. Keep up the LDN. Trish Hi all, and Happy New Year.I was diagnosed with RR MS in 1996 and have tried Avonex, Copaxone, Betaseron, and mitoxantrone at different times. Recently found LDN through a friend with IBS who has had success.Currently, I am in a power chair all day, and having a lot of trouble sleeping at night. During the last year I have started having spasms at times in my hip flexors, and sometimes in my knee. These have gotten more painful as time has gone on. I take 20mg baclofen morning and night for this. Sometimes take some zanaflex as well when really bad.When I sleep I do not move much, except that during the night my legs tend to draw up more. Before starting LDN I was waking up about every hour to go to the bathroom. Since LDN I am sleeping sometimes 3-4 hours at a time. My bladder seems to be more behaved overall.Started LDN at 3 mg at night in mid November. By the end of the 1st month, was starting to feel some tingling in my legs, and standing up was getting a little easier. Missed a few days because of Rx problem going into 2nd month. Since then, the spasms have been much worse and more painful, especially when I first wake up in the morning. The more I can make myself move around a little, the less it hurts afterward. I sleep on my side, and I get pain in my hips during the night. In the past, this happened occasionally, and I would use Darvocet for a day or two and it would pass. Now all I am taking is Tylenol, which takes the edge off sometimes, but certainly doesn't knock it out. It has been really bad the past 10 days. Any suggestions for what I could try for pain?Also, I have a touch of asthma, and had started using Advair. I know this has steroids in it, and was wondering if anyone else has used this with success with LDN, or if you have other suggestions.Thanks in advance for input.Cathe