Pain in MS can occur over time and is associated with stiffness or spasms in the muscles. This type of pain can be caused directly by nerve damage or indirectly due to falls, internal infection or the stresses and strains of living with MS.
I have weird “disco legs” at night sometimes where one or both legs will spasm, causing me to jolt and wake myself up. This can also occur in my arms, and it’s almost as if I can feel the nerve damage like an electric wire exposed and sparking.
I take medication for this, but it tends to knock me out and give me a dopey hangover the following day. This is a problem if I have to drive to work early so have to weigh up what’s more import, a good night’s sleep or feeling alert in the morning!
I have a prescription for codeine as I sometimes wake up in terrible pain due to not moving enough in my sleep. Also, I put stress on strange muscles groups as I don’t walk the way I was designed to and sometimes have an aching back or neck that can’t be relieved by over the counter medication. Lastly, I limit myself to once or twice a week though as I’m terrified of becoming addicted and ending up with more problems! I also feel dopey and wiped out after taking these and need to make sure I don’t have anything important to get done!
Many people swear by alternative therapies such as cannabis and research into this area is happening all the time. It’s a shame that some MSers I’ve spoken to in the UK are using cannabis illegally because it’s still not legal even for medical use here.
Numbness or Pins and Needles, and Neuropathic Pain
As well as regular normal pain, we MSers also have to endure strange sensations caused by nerve damage that are often hard to describe and explain. This can include numbness, pins, and needles or an itching sensation as if insects are crawling under the skin!
I also experience a weird, electric sensation in my legs as if I’m getting a mild electric shock. I had one patch of my stomach go numb for weeks once, and my face and jaw often go numb, causing speech and swallowing difficulties.
As with most MS symptoms, these can be worse when fatigue sets in – so regular rests and avoiding exhaustion can help.
It’s important to remember the part relapses or flare-ups play in MS symptoms. If you have relapsing and remitting MS (RRMS), it’s likely that you’ll recover at least partly from a flare-up of a new symptom and taking steroids and resting can help speed up recovery.
Over time the nerves can become damaged and leave permanent scaring where you won’t fully recover, and there’s also the possibility of developing secondary progressive MS (SPMS) where you won’t have relapses, but progression may get steadily worse.
Whatever type of MS you have, it’s important to remember you can learn to manage new symptoms and you don’t have to suffer alone.
How to Manage New Symptoms of MS
- Know your own MS. Keep a diary of what’s normal for you and keep track of any changes.
- See your health care team regularly. Make sure you write down new symptoms and keep a list of questions to ask. How can they help if they don’t know?
- Reach out to people. Twitter and Facebook are great places to discuss symptoms, MS treatments, and solutions without leaving the couch so get online! Local support groups are also great if you prefer face-to-face contact.
- Look after yourself. Eat and sleep as well as you can. Avoid stress and get plenty of rest.
- Quit smoking. No excuses.
The key to managing symptoms is to manage fatigue, in my experience. Most new symptoms have occurred when I’ve let myself get stressed and haven’t looked after myself properly.
I had so many flare-ups when I was trying to work full-time, look after young children, maintain an active social life, be the best, sexiest wife and be an award-winning homemaker! Something had to give, and MS kept reminding my body that it was in charge and a new relapse then floored me.
As soon as I dropped my hours at work and gave myself a break, things started to stabilize and improve. Now I plan and prioritize my time, making sure I don’t overload myself with too many activities.
I also incorporate rest days into my schedule where it’s ok to sit in my pajamas for most of the day to recharge my batteries. I ask for help and delegate to other people, so things still get done without leaving me exhausted.
New symptoms can be frightening and leave you feeling isolated and alone. Reach out to other MSers, talk it through and don’t suffer in silence.