Spasticity on the Inside
Spasticity is a common complaint with multiple sclerosis. After almost two decades since being diagnosed, I am so fortunate to have avoided obvious spasticity or contractures in my limbs. I can still walk with strength, my limbs don't twist in odd contorted ways. So it took me a long time to figure out that I was, in fact, suffering considerable spasticity on the inside.
Chronic pain and numbness
I've lived with constant pain in my shoulders, neck and back for many years. During the night I wake frequently with hands so numb I can't feel my entire hand. I can't stay lying on the same side and have to roll over. If I'm lucky I fall back to sleep, but on many occasions the numbness starts in the other hand that I am now lying on, and sleep eludes me. I don't seem to sleep well on my back, although many times I have tried in desperation when side sleeping just wasn't an option.
A constant need to pee
For a long time now I have suffered from urine retention and a constant need to pee. I'm talking every twenty minutes of the day, which makes it difficult to walk anywhere with confidence unless I know there is a toilet within reach, especially when it's cold.
I, like most, suffer the joys of continued constipation, and now I have to rely on osmotic softeners or I just don't go.
Then there was the strange symptom that took years to crack. I kept suffering sort of pseudo obstructions in my gut, and couldn't seem to eat much without feeling like my food was coming back up. It did not seem to want to leave my stomach. I had a permanent hard ridge jutting out where my stomach is located.
I could no longer eat any kind of stodgy food like bread, rice, pasta, porridge or too much fibre of any kind, without getting into strife.
God forbid I ever ate a bag of popcorn. I learned this the hard way after a few horrific bouts of vomiting the whole bag back up and nearly choking on the pieces as they were ejected.
Painful hard lumps in my stomach
I would get painful hard lumps high up in my stomach like an infection and it would take weeks of liquid foods only to clear it. I thought for a long time it was some kind of chronic diverticulitis but tests proved otherwise.
Baclofen started out like a miracle drug
So imagine my surprise about a year ago when a GP suggested I try Baclofen. It started out like a miracle drug. Suddenly I could sleep with no tight, numb hands all night. My stomach no longer had that hard ridge under my ribs and my food actually seemed to pass through my digestive tract. Imagine that! I could eat more of the taboo foods and be fine. I was able to cut back on the Osmolax.
My back, neck, and shoulders were suddenly pain-free! I was amazed! But best of all I could do a nice big pee with ease, and could actually go up to 2 hours before the next one! This last miracle was a game-changer.
Since Baclofen is an antispasmodic, muscle relaxant that works on the neurological system, I soon realized these issues were clearly all a result of spasticity, just mostly on the inside. I could not believe the drastic changes this little pill had made to my entire body.
The nasty side effects
Sadly though, it also soon became apparent that Baclofen brought its own nasty list of side effects.
My balance and dizziness were hugely affected, to a point where my whole body lurched to one side and I couldn't walk without a walker. My right leg became so weak I could barely walk on it.
An intense burning and heat started in my legs, and if I went for a walk, even in 3 degrees celsius my feet would be on fire, even burning to the touch.
I suffered massive, debilitating depression and a kind of irritability that made it difficult to leave my chair or even carry out any activity with patience or care.
I also seemed to be having rebound spasticity, where my leg muscles were so tight I couldn't even bend my leg to put my shoes on. Plus the initial benefits from the Baclofen were disappearing unless I upped the dose. However, this was impossible without the side effects becoming unbearable.
The hell of trying to find a happy medium
I have lived through 12 months of hell trying to find a happy medium with this drug. I'd stop completely for a while, only to have my insides all block up severely again and be unable to eat. The pain would return and I couldn't pee properly again. I'd try to introduce the drug at slower and smaller doses, only to end up hitting that wall eventually, where the side effects were severe and the benefits no longer working. I started wishing I'd never touched this evil drug and even threw out an entire bottle once so as not to be tempted to touch it.
With help from my GP, I tried other drugs to no avail. One of the best alternatives is not available in Australia. My Neuro and my GP both told me there was nothing else I could take to help. I felt a sense of complete despair as I could not tolerate this drug, but I couldn't live without it either.
Baclofen and compromised kidney function
Eventually I did some research and discovered that patients with even mildly compromised kidney function can have Baclofen build up in their system, as they can't flush it out fast enough. The result can mean that as little as 5mg can cause overdose symptoms. As I have a mild kidney condition it became obvious that this was happening to me. I discussed this with my doctor and we formulated a plan.
As I already take Clonazepam for anxiety, and this was the only drug that helped me cope somewhat during the times I stopped Baclofen (being a muscle relaxant of a different kind).
The best compromise I've found
We worked out a dosage system where I combine clonazepam with a small dose (around 4mg) of Baclofen. Although not perfect, I seem to have found the best compromise of lowering my spasticity symptoms to a level I can manage, without enduring too many side effects.
So far its been working for a couple of months, so fingers crossed it stays that way. I can walk again without too many balance issues too, which was probably the biggest relief.
Advocate for yourself
My takeaway from this story, if you have odd pain and symptoms that you can't explain. Don't put up with them for years. Seek help and look into the possibility that spasticity could be the cause. And if you don't get adequate help, keep asking questions and advocating for yourself until you find a solution you can live with.
Thanks for reading.
How many specialists did you see before finding "The One"?