Always so glad to see you. I'm sure you are seeing alot of new faces on the forum.
For all who do not know, Slightly-B is one of our verteran forum members - been here for a looong time, took a loooong time to receive dx, and many, many ups and downs inbetween.
While I know there must be something to help that over rotation, that may have to do with strengthening and PT, I do not know what the exact exercise, maneuvers would be.
Can you get to a PT? So, they can see it first hand and work with you?'
The meds for spasms help but do come w/their fare share of secondary problems. i.e., limp limbs, which makes us use them less because we feel so weak, which leads to dwindling of our muscles. I stopped the baclofen for this reason. Xanaflex gets me by now, and does help spasms.
I hope you can sort it out w/the pain mgt doc, maybe he/she would be willing to change things around a bit, instead of up'ing existing.
You may find relief from medical marijuana. Is it legal in your state?
We have access to it in Canada for MS pain, as well as two Rx meds, Cesamet (nabilone) and Sativex buccal spray. Both contain synthetic compounds similar to natural cannabinoids and found to be effective for MS pain. In the US I believe Cesamet is approved by the FDA for chemo induced nausea but not for MS pain, so it may not be easy to get access to it. And as far as I know, Sativex isn't approved in the US.
In US states where it is legal, natural may be the easiest to get, and perhaps is preferable to the pharmaceuticals.
I'm currently taking 1mg of Cesamet at night for neuropathic pain and it seems to be hoping in conjunction with gabapentin and nortriptyline.
Helping, not hoping! Typos, grrrrr!
doublevision1- Hi hun :) How have you been? I think medical marijuana has been on the ballet several times but has never passed. They have been pretty uptight here in Ohio. I'll see what the pain doc says about those other things you have listed though.
Shell- Hey there :) The forum has changed a little since I last visited. I pushed some buttons and ..bam my post was gone lol. Anyways I did try PT for awhile. Nothing has worked. The spasticity is just turning the hip joint out and putting pressure on the joint, if that makes since. I'll get in certain positions and can't move my legs out of them. Both legs are getting involved now. I'm still mobile. I even joined a band. I'm doing what I can do as long as I can do it U know? Just would like to do it with less pain.
You haven't seen much of me in awhile either. Relapse issues, etc. I am sorry to read of your terrible hip pain. My PT of 7 years worked on my hip pain to reduce it tremendously. When I don't do my exercises, it flares.
Shell was wondering if I would share my pain mangement expriences with you.
I went to Pain Management for approximately one year due to bone pain especially after IVSM, chronic pain that interrupted my sleep continuously, etc. I had the leg pain 24/7 regardless of the IVSm.
Since I do have an MS brain and can't remember evrything since it's been about 18 months since I've been there, I will relate what I can remember. However, a true pain mangement team is the way to go. They titrate the drugs upwards until they get you at a level that you can function at. At one time, my meds (including BP meds,etc.) ran 20 meds long but the pain team WORKED!
They upped by gabapentin (Neurontin) to the max, changed my atriptyline to nortriptyline, added Trileptal for bilateral trigeminal neuraglia, Klonopin ( clonazepam) is used for spasicity since Baclofen didn't touch it. the Klonopin has been slowly raised over the years and I am on a rather high dose yet am NOT drowsy and function well .
The Pain MD finally decided to try IV Ketamine infusions. This was also titirated up. It's an "experimental" drug for MS pain and doesn't work for everybody but it brought welcome relief to me except it never lasted long enough (3 weeks) until the next infusion. When it did work the bone and muscle pain subsided to a tolerable level.
They were setting me up for an intrathecal (permanent line in the epidural space) with a med I cannot remember the name of. It did come from the the neurotoxin of a particular snail. The clinic had several patients on it and I spoke to them. They all said it helped tremendously although not all had MS pain, some were chronic neuropathy and some had back pain.
I was just about to have the procedure done. I had signed the papers , set up the psych eval, set up the surgery date, etc. On the last doc visit before the procedure (3 weeks away), the doc had read about a drug used to treat pseudobulbar affect in MS patients. The drug , Nuedexta, seemed to diminish pain as well. Neudexta is FDA approved for pseudobulbar effect but "off-label" for pain mangement. The doc asked my DH if I cried a lot and he said yes. the doc said that's good enough for me to call it psuedobulbar affect. He put me on it and lo and behold IT WORKED!!!!!!!!!!!
I didn't have the epidural pain pump (but would have, had the Nuedexta not worked), I stopped the IV ketamine immediately and slowly backed off my other meds. It's possible that I am in remission as far as the muscle and bone pain (doubt it) but whatever happened , happened within 10 days time.
I still take Neudexta, Klonopin, Neurontin and several other drugs but had to stop the Trileptal (caused an acute Neuro ICU admission due ot low sodium). Have decreased my BP meds since my pain is decreased. I no longer take my nortriptyline except on a prn basis during a flare since it slurs my speech even more than MS does.
I have had at least 3 courses of IVSM while on Neudexta and the muscle/bone pain is minimal...Advil works wonders for it. But do ask your doc before taking the Advil due to drug reactions and blood dyscrasias, liver and kidney side effects.
I hope all of this jumbled information will help you. My best selling points are a GOOD neuro literate physical therapist, Klonopin and Neudexta. the rest of your meds can be tweaked around this base.
I wish you luck in resovling your pian and admire your resolve to do as much as you can while you ca. Good luck with the band!
Thanks ren :) That's some great info. I appreciate it.
I have terrible pain in my lumbar spine and the facet joints from arthritis and disc issues. Some of these are hereditary and the arthritis is from the inactivity due to my MS which kept me from running the 4 minute mile due to ataxia and multiple attacks in the beginning 10-15 years. It has quieted down in the last few years but still the attacks increase symptoms. All the damage remains with heat, etc. making it worse.
I have interventional spine injections into the lower spine that really helps with the pain. They can do facet injections. A 1.5 Tesla MRI of the lower Spine and hips will ferret out the issue if any. MS rarely affects the lower back or lumbar area.
I wish you the best with the pain. I also use a TENS unit that helps relax the muscles. I am going to begin a Yoga program and adapted swim program.
I just lost my second service dog after a long intense battle to save him from a cancer that was inoperable. It is usually cured by surgery and follow up chemo. That has increased pain in my back. I think sometimes stress lodges itself in the lower back and hips. So as I grieve, I believe the pain will subside along with the other measure I will take.
I wish you the best. Not sure about the marajuana - the source should be so pure so as not to introduce more problems/complicaitons. Everyone must decide for themself in that regard.
Let me know if you need more specifics.Good luck and patience finding just the right balance!
I love seeing faces I remember... I haven't been on in ages either! I also have PPMS I take... Celebrex, Lyrica and now Soma at bedtime... the combination seems to work well for me. I find I'm getting foot cramps more frequently and someone told me... drink pickle juice, I thought this is very weird! The other day I had a cramp that wouldn't release so I had 2 pickles (half sour) and 1 gulp of pickle juice... it released and didn't come back... works for leg cramps too... check it out :)
~live as if all your dreams came true~
Sincemy incidence of low sodium and subsequent hosptialization, I was told and now am a believer that the low sodium causes muscle cramping.
Make sure to incoporate enough sodium into your diet. I had a hbit not to due to hypertension. Treatment with numerous drugs simianeously caused the low sodium.
Enjoy your bag of pretzels or pickles and improve your comfort.
Thank you for posting this. All I knew about for pain management was gabapentin, anti-spasmodics, and certain anti-depressants -all in pill form. Starting this thread is helpful to all of us.
Hi Slightly broken, nice to see you back here. Sorry to hear that your pain is so bad, and that you are looking for answers, and that is a good thing. We seem to have to be an advocate for our own health , and this is a super great place to start.
I am to go to a pain clinic too. I am supposed to go on a Tuesday at 4 in the afternoon, which is about a 45 min drive for me in rush hour, to go to a orientation, and then to decide what may or may not work for me. I don't really get it, but we may try it anyways. Apparently, they do the laugh therapy, and my Dr said to try it, and I can't really see how that would help me.
I too am on lots of drugs, and my Gabapentin is 3000 mgs,
and 30 Baclofen, and I did try the amitriptyline, but it was not good for me, ( it actually afftected my ears, and balance, and it was painful) ... so, now they upped my Anti-depressants instead, and am on some sleeping meds, and the Copaxone too.
I do hope that you can find some answers to your pain, that is the most important .................
Be well, and take care of yourself....
I've had accupuncture for neuro pain in my lower back at the local MS Society by a phsio/accupuncturst who really knows mS and it has worked sometimes immediately. My pain is gone for now.
Other than that ice & heat worled for me.
First and foremost, please forgive my earlier post where I did NOT proofread my entry. Big mistake ! Lots of typos and misspellings. Sorry, hope it made sense.
One thing I forgot to mention was the use of Cymbalta. It worked wonderfully!!! It did not mix with some of my other meds and I truly wish I had it back, as it was a great drug for which I had NO side effects, just pain relief!!
I hope all that are in chronic pain give every therapy a chance. I , too, was reluctant with some of the treatments in my plan but eventually, after carefully tweaking and pruning I came out with an outstanding plan of action that WORKED!
Sodium hasn't helped me... I had to increase my salt intake a few years ago due to hypo-tension... so I use a lot more salt than I ever did. It's so funny when you Dr tells you to increase your salt. I know it sounds strange but the pickle thing really works, so funny! Thanks for the info :)
~Live as if all your dreams came true~