Muscle aches

[AriD]

Hi i am looking for some advice about worsening symptoms. Over the last year, and especially this past month, I've been having terrible muscle aches in my legs, mostly my thighs. It feels like, back when I could run/bike, I used to feel after a long period of exercising. Except now I feel that way almost all day, everyday. I can't stand more than a few minutes without having to sit down. My legs feel like they are going to give out at any time And they have a few times. The pain has gotten much worse recently. I had a course of steroids recently with no improvement, actually has worsened. it feels like it won't be long before I'm unable to walk anymore. Has anyone had these symptoms? Have they gotten better? Does anything help them improve? Are they usually the precursor to being unable to walk? I'm really scared about my disease progression. It seems to be worsening quickly. My doctor says to stay with betaseron instead of trying new DMD. when should you try a different one, other than because of intolerance issues?

[SNOOPY]

Hello AriD,

Steroid are used for exacerbations which is due to inflammation of the CNS. Steroids do not change the course of the disease but might shorten an exacerbation. Steroids may or may not resolve symptoms, sometimes it just takes time and patience to see improvement. Sometimes we are left with residual symptoms or those that come and go.

Not all exacerbations need steroids and are not always necessary. It is possible for exacerbations to resolve on their own.

The Disease Modifying Drugs may or may not help with symptoms. These medications were meant to try and slow the disease progression, to try and reduce lesion load and to try and reduce the amount of exacerbations one may have. There is no guarantees.

Symptom management medications are used to treat the symptoms we experience with MS.

Unfortunately, living with symptoms is quite normal for even those with Relapsing/Remitting MS.

Your legs aching could be Neuropathic pain and/or Spasticity, either way there are symptom management medications that can be prescribed.

You may want to speak to your Neurologist about a referral for Physical Therapy(PT). PT and exercise can improve core strength, strength, endurance, and mobility. You might find your legs improving, over time, with exercise and PT.

I have had problems with my legs since I was a child (leg pain, falling/tripping, dragging my feet because lifting them was too difficult and toe dragging). When I was 18 I stepped off a curb and my leg gave out and I went down. When this happened I had no warning, no leg pain, tripping and nothing in my way. I was young, active and I was very physically fit.

Fast forward to the age of 24. I had my first severe exacerbation which ultimately lead to my diagnosis. I had quite the list of symptoms, among them was my very, very limited ability to walk. After my diagnosis my Neurologist prescribed oral Prednisone and told me the best thing I could do is walk.

Even with steroids it took me a year of trying, to regain my mobility. That year was full of pain, exhaustion, frustration and tears. It was all worth it, I could finally walk 2 miles...and then...I had my second severe exacerbation, which was worse than the first. My road to recovery was a mirror image of the previous year.

I still deal with aching legs (off and on). I asked my Neurologist early on if I can keep doing things when my legs hurt or should I sit down. He told me it doesn't matter, if I feel I need to sit down then do so, if I want to keep doing whatever it is I'm doing then keep going (either way is fine).

[AriD]

Thanks Snoopy

I'm so sorry for all you've been through and at such a young age. I was 37 with my diagnosis. I've had steroids many times over the years. Usually over time, as you said, things get a little or a lot better. I've never had them continue to dramatically worsen within a couple of months. That's what scares me. My leg muscles ache all day without break unless I'm taking a ton of Motrin or Tylenol, heating pads, etc. I'm on neurontin already too. I've always been determined and pushed myself with PT, exercises, and work. Nothing is working anymore. Didn't know if this is how it usually progresses for people when they are unable to walk any longer. I'm just so tired all the time and feeling so discouraged. I so appreciate your response. Take care.

[SNOOPY]

Hi AriD,

Talk to your Neurologist about a different medication for the pain in your legs. Finding the right medication or combination could make a difference.

Heat to the affected area does help, I have used heat many times on my legs with good results. If you are heat sensitive you should use heat for pain with caution.

Your leg pain might be due to the weather. I have found cool or cold(er) temperatures triggers my leg pain. My legs hurt much less during the summer but air-conditioning has the potential for triggering the leg pain again.

Another thought would be spasticity as the cause for your pain. Have you ever tried a muscle relaxer to see if that helps? Might be worth a try.

Years ago my Neurologist told me over-the-counter pain relievers will not touch MS pain. I have found this to be true. So, the question this brings up is --- if the otc pain relievers are helping your pain is it possible the pain is due to something other than MS?

I do hope you find relief.

[AriD]

Thanks snoopy for your advice. I have talked to my neurologist about it but she doesn't say much.

I take higher doses than otc levels of Motrin and Tylenol. They don't take the pain away just lessen it some. I do use heat for my hip pain- steroid related arthritic changes. I'm also on neurontin. Some of the pain is definitely spasticity. I'm nervous about muscle relaxants since I drive and am still working. Today was really bad. My legs hurt so much and I couldn't stand at work for more than a few minutes at a time. Worse day ever.

[SNOOPY]

Today was really bad. My legs hurt so much and I couldn't stand at work for more than a few minutes at a time. Worse day ever.

I am sorry, AriD

If your Neurologist isn't helpful maybe you need a new one.

I'm nervous about muscle relaxants since I drive and am still working.

I understand.

Each person reacts differently to medications but, typically, muscle relaxers will cause drowsiness.

My limited experience with muscle relaxers is mostly based with Baclofen. I have used Baclofen a few different times never using it long term until last year. I am currently on a daily low dose. Baclofen did cause sleepiness until I adjusted to the dosage I am currently at. If I increase the dosage I can expect to deal with the sleepiness until I adjust to the increase.

I had been on a muscle relaxer that did not cause the side effect of sleepiness/drowsiness but, after approximately 6 weeks I no longer found it effective for my spasticity.

It would certainly be worth trying a muscle relaxer to see if it would improve your leg pain and function. Don't let fear stop you from trying --- sometimes life is better through chemistry

Take care.