Wednesday, 18 April 2018

Guest post: Your attention please: MS hurts!



Visual impairment, sensory disturbances, weakness and fatigue are among the most commons symptoms in MS, but there are others such as pain, which is highly distressing and can easily affect day-to-day life. This symptom is often difficult to describe by patients and is sometimes difficult to diagnose and treat by clinicians.


Let’s start with the fact that pain can be very heterogeneous, not only from patient to patient but also in the same patient from time to time. In classifying pain associated with MS, it is important to consider not only its characteristics but also its underlying mechanisms: Pain directly caused by MS lesions vs. pain caused by other MS-related phenomena, such as spasticity and loss of mobility. O’Connor et al. have proposed a practical classification system for pain conditions associated with MS:




Such heterogeneity may partially explain the wide variation in the reported prevalence of MS-related pain: 40 – 86%. So yes, MS hurts! But the most worrisome thing is that, according to some reports, up to 50%of MSers with pain go untreated. Perhaps one of the main reasons for this is the difficulty in recognizing and measuring pain. But how do we objectively measure something that is inherently subjective? To this end, several tools have been proposed in the literature and among them, those aiming to identify and distinguish neuropathic (due to nerve damage) and nociceptive (due to damage to other body tissues) pain are particularly helpful.

To date, only a few studies investigating pain in pwMS have used a combined approach based on physical examination and validated questionnaires. The study below, using highly specific diagnostic criteria for identifying the different types of pain in MSers, showed that the following factors are associated with a higher probability of having pain:

  • Female gender
  • Higher EDSS score
  • Older age
  • Longer disease duration

When addressing pain related issues, we all need to tell more, ask more and listen better! Let us know what you think!

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Solaro C, Cella M, Signori A, et al. Identifying neuropathic pain in patients with multiple sclerosis: a cross-sectional multicenter study using highly specific criteria. J Neurol. 2018;265(4):828-835.

BACKGROUND: Pain is a common and heterogeneous complication of multiple sclerosis (MS). In this multicenter, cross sectional study, we aimed at investigating the prevalence of pain in MS using highly specific criteria for distinguishing the different types of pain.

METHODS: After a structured interview, in patients with pain, clinical examination and DN4 questionnaire were used for distinguishing neuropathic and nociceptive pain. In subjects with neuropathic pain, the Neuropathic Pain Symptom Inventory was used for differentiating neuropathic pain symptoms.

RESULTS: We enrolled 1249 participants (832 F, 417 M, mean age 33.9 years, mean disease duration 8 years, mean EDSS 3.2); based on clinical evaluation and DN4 score 429 patients (34.34%) were classified with pain (470 pain syndromes): 286 nociceptive pain syndromes and 184 neuropathic pain syndromes. Multivariate analysis showed that pain was associated with age, gender and disease severity and that neuropathic pain was distinctly associated with EDSS.

CONCLUSIONS: Our study, providing definite information on the prevalence, characteristics and variables associated with neuropathic pain due to MS, shows that a more severe disease course is associated with a higher risk of neuropathic pain. Our findings might, therefore, provide a basis for improving the clinical management of this common MS complication.

by Saúl Reyes

10 comments:

  1. Yes the pain is tiring, difficult to tolerate, and affects day to day life enormously.

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  2. Constant neuropathic pain in feet and is managed with gabapentin. Muscle spasticity with baclofen and stretching. Dxed 1995. SPMS. Too often patients are uninformed about pain and it’s management as MS progresses.

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  3. Agreed. Nothing to date has worked to ease my leg pain. It's symetrical and difficult to describe. It's also variable in intensity, but is always present. It really does affect quality of life greatly.

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  4. When I was first diagnosed, my cognition problems prevented me from recognising and explaining the pain properly. My body was burning from my legs up to my back and I had never been suicidal up to that point but thought about it then ("thought" only). But I kept telling the drs that it wasn't pain because I couldn't recognise it as pain that I knew as normal pain from my normal life. I was also temporarily deaf but was not able to explain to the drs and nurses why I wasn't answering them properly because I couldn't recognise that I was deaf. I was my own worst enemy. But looking back on it now, I think they should have recognised that my thinking was affected and I wasn't able to express myself properly.

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  5. I think it is probably fair to say that when first experiencing pain due to MS it is extremely difficult to explain how it feels. I remember one time telling a doctor that it felt as though there was a road race going down my lower arm. I have since realised this was the first stage of developing quite severe albeit intermittment pain in my arm - perhaps reflecting the onset of damage to the nerves. While I do try to monitor the pain and give feedback to the doctors, it is very difficult at times to provide clarity of the different types of pain. On another occasion I could only describe a burning sensation when I sat down as the same as sitting on an old fashioned radiator during my school days. I suppose the onus may be on clinicians to try and develop some form of vocabulary to help patients give them clarity about the different types of pain they may be experiencing. As the article says listening is very important and actually a real skill.

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  6. I always wish pain was visible, perhaps with a glowing red light. Or burnt tissue. I think drawing pain with a red crayon onto diagrams is a good way to explain? Central neuropathic pain is the most debilitating and cruel symptom ever. I'm hopeful it will improve as neurones die.

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  7. I always wish pain was visible, perhaps with a glowing red light. Or burnt tissue. I think drawing pain with a red crayon onto diagrams is a good way to explain? Central neuropathic pain is the most debilitating and cruel symptom ever. I'm hopeful it will improve as neurones die.

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  8. Dr. Saul, thank you very much for this text.

    The pain in MS is really relegated, both by the especilaist physicians or/and by those who lives with pwMS.
    I've even listened to the pain felt by pwMS, like me, as something even "psychosomatic", when mainly those with spinal cord lesion really feel pain.

    I have a spinal cord lesion between C1 and C2 (it was this injury that made me discover MS) and when I have pain I generally support well, but sometimes I have to resort to Gabapentin, which relieves pain or makes the pain go away.

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  9. Does anyone else experience worsening of their other symptoms when they take gabapentin? It was immediately apparent to me that my walking and bladder control were much worse, even after taking a very low dose of gabapentin. I prefer to have the agonising pain (Trigeminal neuralgia).

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  10. You probably wouldn’t believe how many heathcare practitions (especially doctors) still believe that MS “doesn’t cause pain”
    (A direct quote from a doctor). I regularly see posts about this in various MS forums. It’s pretty infuriating when I read that MSers regularly have to try to educate their healthcare team about this and often still get dismissed as “anxious,” “depressed,” or attention or drug seeking. Even when they present evidence from reputable sources online! It’s shameful, especially when the solution may be as simple as an SNRI or GABA. Lots of bad misinformation and old information still out there effecting MSers care when they may not have the energy to self-advocate. Also many neuros don’t really handle day-to-day meds for symptom management, expecting only to handle DMT-related stuff (this has been my experience) and so the task of MS pain management can fall on GPs who don’t know enough about it to manage it effectively. My GP would not prescribe GABA until after I nagged my neuro to prescribe it. He also would not prescribe Modafinil for farigue. I was only able to get Modafinil prescribed and Gaba increased by a psychologist attached to my MS clinic who made treatment recommendations to my GP. The psych suggested the Modafinil without me asking or promoting. Afger all, no MS patient could possibly know enough about their disease or body to know and ask for what is needed *sarcasm.* I propose that issues such as these may be some of the common reasons why many MSers go without pain relief treatment. Also, I found my depression directly (and understandably) correlated with my pain levels. Once the pain was properly treated the depression lifted and became a non-issue. Seems like a no-brainer but apparently this is a last thought or afterthought for most of the healthcare practitioners I’ve encountered to date, even in major centers.

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