Hi Steve - your MS doc is uninformed. It sounds like his nurse is more knowledgeable than he is on this particular symptom. Neuropathic pain, esp in limbs but also in the face and around the torso, is absolutely a symptom of MS for many of us.
I have it in my hands, much worse on my L side, and I have had it in my feet though that has mostlly remitted.
I'm sure there are other causes of pain in hands and feet but given you have a dx of MS I would think this would be the first obvious conclusion as to the cause of it in your case. It often starts on one side first and may or may not spread to the other side, however during my first major flare and I had it in both hands and both feet; it started on my right side but within a couple of days was on my L side as well.
You mention fatigue also coming back. All of this happening at the same time would make me think you may be having a flare. It sound like your nurse might be thinking that too, though I wonder why she'd suggest prednisone, as IV Solumedrol is typically ordered to treat MS flares.
I say all of this assuming you have relapsing remitting MS...is this correct?
I'm sorry to hear haven't had support in terms of others who understand what you're going through, but you have it here now and as long as you choose to hang around. Dealing with pain is among many important topics the we discuss here, and people here do understand what you're going through. In addition to posting your questions and concerns here, I believe there is definitely more you can do than pray about it, as you said.
If your symptoms worsen dramatically before you can see your family doc, you can go to an ER and if the ER doc dx'es you as being in a flare, they can treat you then and there with the IV steroids.
If you are ok to wait till you see your family physician, I'd suggest you ask them to consult with your MS doc to better understand where he's coming from. If he cannot be convinced that pain is a symptom of MS, I think you really need to find a new doc, one that is better informed. There is much medical literature available regarding pain in MS; it really is concerning that he is uninformed about this, and it would make me question what other gaps in knowledge he may have.
There is no reason for you to suffer needlessly when treatments are available, both for the symptoms that occur during flares as well as ongoing, chronic pain that lingers.
I will caution you that unfortuately pain is one of the most difficult of MS symptoms to treat, though it can be alleviated so it is at least more bearable and renders you more functional.
Typical pain meds in MS are: Neurontin as your nurse suggested; Lyrica; Elavil; Wellbutrin; Effexor; as well as the synthetic cannabinoids Cesamet & Sativex (though unfortunately not approved in the U.S. for MS pain), and cannabis, which as I understand it has varying availability in the US depending on the state you live in.
Keep us posted and let us know how you're doing and if you have other questions or concerns. This is a very supportive group and you will always find someone here who will understand what you're going through.
Pain in multiple sclerosis: a clinical and instrumental approach
MG Grasso - Santa Lucia Foundation, IRCCS Rome, Italy, mg.***@****
A Clemenzi -Santa Lucia Foundation, IRCCS Rome, Italy; Sant’Andrea Hospital, Neurological Clinic University “La Sapienza” of Rome, Italy
A Tonini - Santa Lucia Foundation, IRCCS Rome, Italy
L Pace - Santa Lucia Foundation, IRCCS Rome, Italy
P Casillo - Santa Lucia Foundation, IRCCS Rome, Italy
A Cuccaro - Santa Lucia Foundation, IRCCS Rome, Italy
A Pompa - Santa Lucia Foundation, IRCCS Rome, Italy
E Troisi - Santa Lucia Foundation, IRCCS Rome, Italy
PAIN IS A FREQUENT AND DISABLING SYMPTOM IN MULTIPLE SCLEROSIS (MS) PATIENTS.
In this study we assess the frequency and intensity of pain, as well as its impact on the quality of life and activities of daily living, in a sample of MS patients.
One hundred and twenty eight MS patients underwent a neurological examination, a structured interview designed to assess pain, and a Medical Outcome 36-item Short Form Health Survey. Functional status was assessed by means of the Barthel Index (BI) and Rivermead Mobility Index. We also assessed the presence of depression, by means of the Montgomery and Asberg Depression Rating Scale, and fatigue, by means of the Fatigue Severity Scale. An algometer was used to measure thermal and discomfort thresholds in all of the patients and a group of 61 age- and sex-matched healthy subjects.
Pain was present in 61 patients. No differences were found between patients with and those without pain in disease duration, disease form or Expanded Disability Status Scale and its functional systems. Patients with pain had a lower vitality score (p = 0.008), mental health score (p = 0.03) and physical (p < 0.001) and mental composite scores (p = 0.01) than patients without pain. Furthermore, there was a significant difference between patients with and those without pain in the BI (p = 0.04). Both thermal and discomfort thresholds, as assessed by means of the algometer, were statistically lower in MS patients than in controls, whereas no difference was observed between patients with and those without pain. There was a statistically significant improvement in the thermal threshold in patients with pain who were treated pharmacologically when compared with those who were not treated (p = 0.049).
The results of this study provide further evidence of the negative impact that the presence of pain has on both the quality of life and activities of daily living in MS patients. The lower thermal and discomfort thresholds observed in our MS patients, compared with controls, may represent a predisposition to develop pain during the course of the disease.
Severity of chronic pain and its relationship to quality of life in multiple sclerosis
Lorraine V Kalia - Department of Neurology, University of Toronto; Division of Neurology, St. Michael’s Hospital, Toronto, Ontario M5B 1W8, Canada
Paul W OConnor - Department of Neurology, University of Toronto; Division of Neurology, St. Michael’s Hospital, Toronto, Ontario M5B 1W8, Canada, ***@****
Introduction: This study used reliable and validated instruments to compare pain severity in multiple sclerosis (MS) to that in other chronic painful conditions, and to examine relationships between chronic pain in MS and health-related quality of life (HRQOL).
Methods: Ninety-nine MS patients completed a self-administered survey comprised of the Medical Outcomes 36-Item Short-Form Health Survey, the Short-Form McGill Pain Questionnaire, and the Hospital Anxiety and Depression Scale.
Results: Pain severity was not different between MS patients with pain and rheumatoid arthritis (P=0.77) or osteoarthritis (P=0.98) patients. Chronic pain in MS was less often neurogenic than non-neurogenic, although severity of neurogenic pain was greater than that of non-neurogenic pain (P=0.048). Chronic pain in MS was found to have no significant relationship to age, disease duration or disease course. Instead, we found that pain was correlated with aspects of HRQOL, particularly mental health (r=0.44, P0.05). Chronic pain was significantly related to anxiety and depression for females but not for males with MS.
Conclusions: Chronic pain in MS is as severe as pain in arthritic conditions and is associated with reduced HRQOL.
Thus, PAIN CAN BE A SIGNIFICANT SYMPTOM FOR MS PATIENTS AND THE NEED FOR TREATMENT MAY BE UNDERESTIMATED.
Maybe the nurse didn't convey the message properly. I deal with that burning pain on the soles of my feet a lot. It feels like someone is holding a lighter to the bottoms of my feet. It is definitely a common MS symptom. My hands hurt too, but in a different way.
Can you call back, or ask for an email address, so your doctor can get your message- from you. I find that having people in the middle often results in the doctor getting a somewhat different message than you originally gave his support staff.
Steve - I don't mean to bombard you with information but I wanted to provide some info that is the basis for my initial response to you. Perhaps your MS doc would be interested in reviewing these articles? :)