Pain in MS

#MSBlog: MS-asssociated pain; one of the biggest unmet treatment needs in MSers. Don’t suffer in silence!

Foley et al. Prevalence and natural history of pain in adults with multiple sclerosis: Systematic review and meta-analysis. Pain. 2012 Dec doi:pii: S0304-3959(12)00647-1.

Background: The prevalence, associations, and natural history of pain in MS are poorly understood. 

Objective: The objective of this work was to study the prevalence of pain syndromes in MS both cross-sectionally, and longitudinally during the MS disease course. 

Methods: We systematically identified prospective studies detailing pain prevalence in definite MS. We used pooled prevalence estimates, explored heterogeneity using meta-regression, and analysed prevalence during the disease course using both estimates at disease milestones and longitudinal studies. 

Results: 28 articles (7101 subjects) describing overall pain, or pain syndromes, met inclusion criteria. Pooled overall pain prevalence (17 studies, 5319 subjects) was 63% (95% confidence interval [CI] 55-70%). Marked heterogeneity in this estimate was not significantly explained by selected study design variables (use of outpatient sample, timeframe prior to study over which pain was assessed) or sample demographic variables (mean EDSS, mean disease duration, proportion of female sex, and proportion with progressive MS). They quantified prevalence of headache (43%; 95% CI 33-52%), neuropathic extremity pain (26%; 95% CI 7-53%), back pain (20%; 95% CI 13-28%), painful spasms (15%; 95% CI 8.5-23%), Lhermitte’s sign (16%; 95% CI 10-25%), and trigeminal neuralgia (3.8%; 95% CI 2-6%) in included studies. 

Conclusion: Prevalence of pain at MS disease milestones (prior to onset, at onset, and at relapse) and during longitudinal follow-up was poorly described. Pain is common in MS, as are specific pain syndromes. The clinical associations and natural history of pain in MS require clarification.

“This meta-analysis confirms what we already know that the majority of MSers experience pain. Some of the pain syndromes are not directly linked to MS, for example migraine. If you spend enough time looking after MSers you realise how much of your time is dedicated to managing pain. Pain impacts massively on quality of life. Pain reduces sleep, exacerbates or makes fatigue worse and is strongly associated with a low mood and even depression. There is a lot we can do about pain. So if you are suffering from pain please ask your neurologist for help.”

10 thoughts on “Pain in MS”

  1. Hi,I can confirm pain is one of the biggest problems for my wife who has ppmx (dx approx2006). She is currently in Hospital following Morhine rendering her in capable of self care and has been in since 2/1/2013. Whilst I know it's unethical to diagnose a patients symptoms, I would appreciate your thoughts as much as possible on the following.Stabbing pain in left lower shoulder area, enough to reduce to screams and tears, can last up to 40mins before subsiding and at the minute can occur frequently throught day and night. This pain initially was more often occuring at night and could go away sometimes for weeks at the oustet, but the last year has seen an increase in frequency.Treatments tried so far include, pre gabalin, gabapentin,baclofen,antidepresents/ anti eplilectic drugs and others. Seen many physios etc who cannot find anything muscular /skeletal that would be causing this pain.This has been going on for around 4yrs and as I said has now reduced her to a very week state with a bmi of 15.1 and is on Fentanyl lollipops.I appreciate you are restricted in what you can say.Regards as always

    1. What is the condition of the left jugular vein? Any new spinal lesion to appear at the onset of pain? Since CSF flow is heavily compromised in PPMS, maybe craniovertebral alignment could offer some relief.Have you consulted Dr. Schelling?

    2. Hi VV,We have had a (if you like blinded examination)on the jugular veins. A doppler examination in the UK revealed a 99% closed vein on that side and this result was repeated in Germany where tests (not doppler) confirmed retrograde blood flow. The examiners in Germany were ignorant to the fact we had had the first doppler scan.Not sure of the next move, I think we are hoping the research contiues. Main concerns are, Vicky is prone to collapsable veins so stents ? Is just treating just ijv's moving the problem and putting pressure elsewhere.What do you think we would gain from contacting Dr Schelling ?I think this whole area will evolve where the whole upper torso will be examined.If any one at Bart's wants a small wager with me, this is where I see the vascular story going. Firstly within the next 3/5 years Parkinson's will be blown wide open, quickly followed by Alzcheimer's, Type 2 (not1) Diabetes, many others and when the Neurologists etc finally acknowledge they have to loosen their grip on MS and come and play with the rest of the Medical world, MS.

    3. Maybe treatment should start with veins that promise long lasting results (azygos, left renal), provided that they need treatment. Half treated CCSVI is just another type of CCSVI, probably with a whole new bunch of symptoms. In any case, a thorough interventational examination should be necessary prior to any intervention.The reason for contacting Dr.Schelling is trying to find the origin of the pain. As i see it, there could be a long-shot here: what if the occluded left jugular vein makes it difficult for certain muscle groups of the neck/shoulder to drain their blood towards the heart, and thus cause muscle spasms and consequently pain?

    4. Hello Andy,I can sympathize with your position as my wife experiences similar pain that radiates from her shoulder down to her elbow. We too have been through the extensive sampling of narcotics, seizure medications and antidepressants. At the onset she was experiencing excruciating pain and as you mentioned would scream and double over in severe pain. This period has past and not sure what why but she still experiences the pain when waking up and for some strange reason around the late afternoon early evening time. We suspect some type of hormone interaction but the Dr’s we visit disregard or are unable to address the issue. Stay strong and best wishes for your wife and will continue to monitor these posts. Doug, Rochester, New York USA

  2. Sorry to hear that. Sounds like they're trying to control the neuropathic pain, which unfortunately is extremely difficult. I don't know where you are, if marijuana can be used for medical reasons. But I have seen how people with debilitating neuropathic pain have benefited. Its use in certain conditions is the subject of much investigation. I don't think the other doctors will bring it up outright, so I'll go ahead, with the standard disclaimer of "don't do anthing that is not legal in your state, etc etc." But read up on the studies. DBH

    1. MJ is already on the list DBH, although she says it doen't help the pain she says she doesn't care so much when she has it (vaporiser btw). Thanks for your thoughts, we might be seeing some action this week re a scan and maybe a nerve block injection subject to what they find.I'm not getting too hopeful as this has been going on for a long time, on a plus note she is now up to 40.5kg.Regards

  3. What can a neurologist do for a constant mild headache? Considering what Andy's wife goes through, it's nothing at all. But it is depressing to have a headache all the time

    1. Depends on the cause! A lot and sometime very little. Unfortunately, I can't respond to personal medical queries on this blog! Medico-legal and privacy issues.

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