I usually make it through the day with minimal to moderate symptoms in my right leg but when I finally settle in for the evening, especially lying down in bed, both of my legs begin to ache and have restless leg-type symptoms. Is this consistent with MS or TM?
I am currently diagnosed with TM (transverse myelitis) but identify more with the symptoms of MS.
The worse time of day for me is sleeping time. I am to the point I hate it. Period. I wish we could skip it. In fact, I often fall asleep at our table or my desk rather than put myself though the pain. It just isn't worth the spasms and burning that I don't feel during the day because I have other thing to occupy my mind.
Maybe all the day's activities are wearing you out but you are ignoring them because you are so busy. Then when you get to relax, whammo. Ask your doctor for the pain relief you need, emphasizing that one that causes sleepiness would be ideal. I hope you can finally sleep through the actual symptoms. Whatever works.
You brought up a very interesting question that comes up from time to time. Night pain vs. daytime pain.
I saw my rheumatologist yesterday because I wanted to know if the pain in my hips was being caused by arthritis or from my MS. We tend to blame all our symptoms on MS and neglect the other reason that could be causing our problems.
He asked what time of the day is worse and I told him first thing in the morning and even worse when I went to bed. He had an x-ray done in the office and my hips came out just fine, no arthritis. So, this is MS afterall. He said that the pain is likely spascicity which we tend to notice more at night.
I take neurontin in conjunction with zanaflex. This helps with the pain. If you can't tolerate neurontin, you might talk to your doctor about baclofen. I can't take baclofen, but hear it really helps a lot of people.
I used to really enjoy my sleepy time. Now all I can hope for at night is that the medications help me sleep through the spasms. Keep looking for a med that will help you.
I try to avoid medicine, too, but sometimes Baclofen helps when I'm having a string of nights with spasticity (like lately). I think it's a medicine, however, that should be taken consecutively. Below are some non-medication suggestions that help me:
Because temperature extremes make spasticity worse, I would make sure you have the right amount of coverings on you. Too much in the winter will cause spasticity. Being too cold, though, can make you really miserable. Make sure that you have the room cool at night during the summer. In the winter, make sure you have plenty of warmth, but not too much.
Not having enough sleep causes spasticity. Get a routine going and make sure you wake up and go to bed at the same time. Read a boring book before sleeping, so that you can hit the pillow before you realize the spasticity is setting in.
Anxiety increases spasticity, so try to avoid this, too. Get your mind on other things and remember routine helps decrease anxiety. Get people to help you with things.
Don't over-do exercising or physical work. I will always have spasticity after doing more housework than I normally do. Get help where you can. Know where your boundaries are in exercising and physical work and avoid going over this or you will pay at night.
Mine are worse because I overdo it and do not realize it and because when I am no longer busy I notice the pain. I use hypnosis to fall asleep it at least it helps to relax. If I awaken by a spasm that is when it is tough. I often sleep with my arms above my head grabbing onto the bed because of the spasms.
Interesting you mention that temperature affects your spasticity. It has been extremely hot and muggy in my neck of the woods for the last week or so, which may have brought on the symptom. I have also noticed that I am colder at night than usual.
As needed, but the bottle is prescribed (and probably should be taken) regularly. Have you had your thyroid checked lately? This can cause more spasticity and to be cold at night, too. There are many people with MS that have thyroid issues.
Are you sure you have spascicity? I can tell you that many of us with MS who do have it, there is just no other way to handle that type of pain other than using medicaitons. I am not a big medicine user either and am very happy that I'm only on a few meds for MS, but I am not going to make myself suffer when there is help out there. Good-luck with the suggestions that were made and I hope they help you.
Recently I heard a therapist talk about dealing with this problem and it was strongly suggested that we take 20-30 minutes before bed to thoroughly stretch our legs to help with this problem. It is a very common problems. best, Lulu
I have spasticity and spasms day and night. Temperature extremes compound the problem for me. I take Baclofen (20 mg, 3x/day), and I often use medical MJ shortly before bedtime. This has helped greatly with spasms.
I totally agree with Lulu with stretching. I do a full Yoga practice in the morning (helps energize me, too!), and stretch my legs again before bed.
Hi jorbsid, I'm very curious if you fond out if your leg pain at night was consistent with MS symptom or TM? I have had the exact same symptoms throughout the last year i.e. pain in one leg especially when I'm lying down in bed and night, and it's aggravated when I have been physically active during the day or if I'm tired.
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