Not everyone with MS experiences pain but for those of us that do, MS hurts! I want to scream when I hear someone say that Multiple Sclerosis doesn’t cause pain. Pain in MS can be caused directly due to damage from the disease itself, or indirectly due to living with MS. I’ve been experimenting with different treatments to reduce pain and have had mixed results.
It’s not in your head, pain is a common symptom of MS.
According to the MS International Federation pain is a common symptom in MS, with up to two-thirds of people with MS reporting pain in worldwide studies.1
The MS Trust cites a study that suggests up to 80% of people with MS may experience pain at some stage.2
The MS Society also reports that pain syndromes are common in MS and specify one study in which 55% of people with MS had clinically significant pain at some time, and almost half had chronic pain.3
Pain in MS is not taken seriously enough.
Most people don’t question visible injuries but invisible pain they don’t understand so, therefore, discount it. Even in the medical community where you’d think they’d know better, sometimes when pain can’t be quantified it’s often suggested that you might be depressed.
There is nothing more soul-crushing than to suffer from chronic pain and feel as though you need to prove it to be taken seriously. I get that there are many reasons for pain and not all of it will be because of MS but some of it might be and my word should be proof enough.
Pain measurement tests should be standard of care.
Personally, I’m not impressed with the 10 Point Pain Scale. I don’t think picking a number on a scale from one to ten and picking a smiley or frowny face accurately reflects my pain which is different from day-to-day. On the other hand, I’ve never even seen the pain scales and questionnaires used to measure pain in MS. Why aren’t these tests part of the standard of care in a disease that research shows pain is common?
Have you heard of the MOS Pain Effects Scale (PES)? Me either.
The PES is a modified version of the pain scale in the Medical Outcomes Study (MOS) Functioning and Well-Being Profile. It only takes a few minutes and assesses ways pain and certain sensations can interfere with mood, mobility, sleep, work, and enjoyment of life which is an issue for more than 50% of MS patients.4
Be proactive to stay ahead of the pain.
Pain is insidious and can affect every part of a person’s life including sleep, relationships, career, and mental health. It can cause people to lose their jobs, their self-esteem, and their quality of life. Living with chronic pain can suck the life out of you. It can be a daily struggle just to get through the day and some days accomplishing something can seem like an unattainable goal. So what can you do?
MS can hurt! Here are some strategies that may help to reduce pain:
- Physical Therapy
- Essential Oils
I tried 6 health hacks to reduce pain and this is what happened:
1) Physical Therapy-
I have had mixed results over the years with PT. It has helped a lot with balance, strengthening, and vertigo but always increases my pain and then I have to stop going because the therapist tells me they can’t help me. Who knew you could fail out of PT?
This treatment has been consistently the most helpful for relieving pain, but the high cost is not sustainable on a regular basis and the results are temporary. However, if I could do this weekly both my stress and pain levels would be lower. After a massage, I can move better, and it helps me with migraine prevention.
Moving, in general, is very beneficial but stretching helps with range of motion and for relieving tight, stiff muscles. When I do this regularly, I don’t have as many deep muscle spasms. The problem with this exercise is that it should be easy but if you do it incorrectly you can hurt yourself, and I have!
For people experiencing cognitive difficulties, it’s hard to remember the stretching routines! PwMS would benefit from easily accessible exercise video links. I think this should also be part of standard care of practice prescribed upon diagnosis to help prevent spasticity and loss of muscle mass which is so important for balance and mobility.
I did biofeedback for my overactive MS bladder but the unexpected bonus (besides not having to use the bathroom every 5 minutes) was diagnosing and getting rid of deep pelvic muscle spasms from my change in gait that had been shatteringly painful and making me feel like something was seriously wrong with me. Biofeedback was like PT for the pelvis.
5) CBD Products–
CBD oil regularly taken helps me with anxiety, pain, and insomnia. I do get vivid dreams sometimes causing me to shout and kick out. My cat hates me on those nights.
CBD Salve and Lotions are my go-to for spot treating pain. I have some temporary relief in the areas surrounding pinched nerves, stenosis, and bulging discs. Unfortunately, it does nothing for my nerve pain.
CBD Gummies take the edge off pain in general.
6) Essential Oils-
I love essential oils! So far they have helped with muscular pain, spasms, stiffness, and migraines. I also find they work great for deeper, throbbing musculoskeletal pain. Indirectly, they are helping my pain levels with their beneficial effects on anxiety and sleep.
The bottom line is while these methods have all helped to some degree, the effects have been both temporary and inconsistent. Still, I find them all valuable tools to help MS hurt less and also to reduce my medication load through these complementary treatments.
This leads me to my upcoming exploration in pain management- Medical Marijuana. So far, I’ve had my consultation and my MM card has been approved. Next up, visiting the dispensary. Stay tuned…
What health hacks can you share that have helped you reduce pain?
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