Like many MS patients, I take a lot of meds. A lot. But I feel like I need all of them, particularly baclofen and hydrocodone since I have some painful spasticity in my pelvic floor and the right side of my neck and shoulder. Lately, my legs have started to feel tight, too.
I have a baclofen pump, but I need to take oral baclofen since the pump doesn't do much for the neck area. About six months ago, I noticed that my long-time dose of baclofen was making me feel more tired than it had in the past, so I cut it in half. I didn't mention it to my pain doctor at the time, because I'm pretty sensitive to drugs, and there had been some conversation about possibly removing the pump, which I didn't want. Bad patient, yes, but I didn't really think it was a big deal.
Now, I've been noticing that even the half tablet that I'm taking three times a day has been making me feel drowsy. Today I took half of a 10 milligram tablet and now, an hour later, I feel sooo impaired. I am writing this under the influence, but I would definitely not want to try using power tools or driving. I'm not eager to walk, honestly. I called my PC and asked if I should get blood work, but I don't think that's it. I just had blood work four months ago, and everything was good, so the chances that I've suddenly developed kidney problems seems remote. Thankfully.
I have an appointment tomorrow afternoon with my pain doctor, who's in charge of the baclofen. I'm hoping we can just adjust my dosage somehow. It's very weird, because my neck/shoulder muscles still feel tight, even though I feel really messed up. For today, I have advised my husband that if I collapse, he's to tell the paramedics it was baclofen. I have looked up the various effects of baclofen toxicity and confirmed that I am in the very mildest stage, called "clouded consciousness". (The worst stage is called "coma"). The half-life is about three hours, and I've noticed that the effects are strongest a few hours after taking it, so after another hour or so I should start to feel better. If not, I'll have to go to the ER. But I am anxious about what my doctor is going to say tomorrow.
Another fun day with MS.
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CatsandCars
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So sorry you are dealing with this. How scary. I'm glad you have an appt with your pain specialist tomorrow. Please let us know what you find out at your appt. It sounds like you may be on to something with the toxicity issue. Some drugs can build up over time and suddenly cause problems after taking it for years without issue. Keep us posted and take care! 🤗
Thank you so much, Helpmeup! Support is such a great antidote for anxiety. I just hope I don't have to stop taking other meds that help me. But this isn't sustainable, so I guess I have to bite the proverbial bullet. I'll let you know what happens! 😊
I'm sorry 😞 I hope you sober up soon! Baclofen doesn't help my neck issues, and the medication that does help my neck can not be taken with baclofen...so I have to use massage, heat, sleep without a pillow, or icy hot.
I have not tried massage, but I should. I agree on the heat and the topical pain stuff. I've been debating getting a second heating pad so I have a backup when mine inevitably dies from heavy use. Thank you for the sober wishes, Kdali! 😅
I keep hearing good things about massage. I really should try it. Also, I did not know there was such a thing as an acupressure mat. Thanks for the suggestion!👍
Massage therapy works very well, but you have to drag your broken body out of the house and pay quite a bit for it, plus if you have knots it's going to hurt for a few days (while also feeling better). The mat is there for you anytime...though there's an adjustment period because it hurts until you get use to it. I bought a Shakti from Amazon. Looks like a torture device 🤣 It has a rounded pillow, which helps with necks, don't just get the flat mat. It can help with sleep, and be used on legs. LifePro, who makes the vibration plates, has a massage ball that works for necks with a little work, and legs. I would read with it under one knee at night (waiting for baclofen to kick in 😵💫).
Wow, you have really been through it, haven't you? I'm sorry you've had so many symptoms and so much pain. Thank you again for sharing what you've learned!
The chiropractor really helps my neck pain. When I don't go for a while my shoulder starts to hurt too. Then after a couple adjustments it gets better again. I try to go once a month to keep it happy.
Hope the pain doctor figures out something that works for you!
Um...... My mind is blown a bit (not hard to do)... Because what I am reading above is that you all have neck pain??? I thought I was alone in that lovely symptom. So much so, I didn't even think it was MS related. I'm not sure how I feel about this. I am sorry for all the suffering I am reading about. It hurts my heart. I wish all of you well, sincerely. I will say that if taking a medication improves your quality of life - you should take it without guilt. I don't think anyone should feel bad for that when it's a necessity to exist. I am all for non-medicine related help as well - Reiki!!!! Massage, chiropractic, acupuncture, meditation. Finding the perfect combination. And that combination will change with time. With seasons. With aggressors. But please, be open and honest with your needs, and with your doctors and pharmacist even. If your brain tends to be more like swiss cheese (🧀🧠) write down all your symptoms/feelings to help accurately relay to your docs so they can help you best. I wish you well, try Reiki, please!! Love, light, and peace.
Hi, Sunandrainbows. I know how you feel reading something on this forum and suddenly finding out that you're not alone in something, like not wanting to go out because showering and getting dressed are too hard, or having a very casual relationship with the vacuum cleaner!
Neck pain can come from different causes, so I'm not positive how much of the tight neck muscles are from MS. I have herniated disks that have caused a narrowing of my spinal canal (stenosis), a lot of age-related arthritis, inflammation of the myelin covering the spinal cord (transverse myletis), and an MS lesion on my spinal cord. There are other words my pain doctor uses, but I'm too tired to figure out what they mean. The lesion is obviously from MS, and the myelitis has kind of an MS-sy sound to it.
It would be interesting to see how many of us have similar symptoms, and for a professional of some sort to tease out which ones are caused or influenced by MS. But if they're busy working on neuroprotective therapies or remyelination, I'll gladly let them continue with that. 😉
I will have to look into Reiki, as I'm not familiar with it. Thanks for replying.
I'm sorry you are dealing with all this. I second the idea of massage. Been receiving massage somewhat regularly for years. Have you ever tried compression wear? I use compression sleeves for my feet and also compression sleeves for my calves/shins. Compression seems to override the intensity of the pain (to a point). Just an idea. I wish you well.
I am learning a lot today! I will have to check out compression sleeves as well. I didn't mention that I normally get botox injections for my neck every three months, but have missed the last two do to what I suspect is on purpose on the part of my insurance company. I have gotten brief massage as part of physical therapy, and I liked it. It seems like a direct way to help the problem! I have only avoided it due to the expense, but I would also like to be more awake. 😊
I don't think you should change your medicine without talking to your doctor first good luck with your appointment tomorrow I hope everything works well
I am so sorry that you are experiencing this! 🧡I am glad you have an appointment with your pain doctor tomorrow. Since I'm so new to this, I don't have any advice, just sending lots of support and hugs! 🧡
Thank you everyone for your support and input. I saw the doctor yesterday, and he said to try taking the baclofen farther apart from other meds (which I have already tried), and possibly just taking it at night, which is going to leave me feeling stiff. He said that if it continues, he will try reducing the dose of my baclofen pump to see if I can tolerate more oral baclofen. Unfortunately, this is happening right as this new spasticity is occurring in my legs, especially my quads at the front of my thighs. So, I'm going to see if I can find some stretching exercises for those, perhaps from MSAA. I also scheduled a massage for Tuesday! Thank you all again. I appreciate you so much!😊
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Hello, I’m new to this community as my husband was recently diagnosed with MS.
A dumb mistake
Better Nuroligist Different Diagnose keeping my fingers crossed...
