My 22 y/o daughter was diagnosed 18 months ago. We are struggling to get her on the right meds and she is noticing increased (and very annoying) numbing from the feet down. Steroids a month ago helped for awhile. We have an appt in 2 weeks at the Mayo Clinic for a full assessment but I am hoping someone out there can suggest a way (not meds) to bring relief to her pain NOW. Another medical condition could be causing her numbing and hope to know more in a few weeks Meanwhile would massage or ice packs help?? any other suggestions??
I have this problem sometimes in my feet but more often in my arms and hands. It can be very painful and irritating. I have tried massage and ice. For me the ice packs have given me better results. In addition, elevating my feet above my hips helps at times. Unfortunately, sometimes I can find no relief and just have to grin and bear the pain. I would recommend she try anything that you all think may help. Maybe you will hit on something others have not thought about.
Free and Almost Free Home Made Reusable Ice Packs
ANYTIME AN ICE PACK IS USEDALWAYS MAKE SURE TO PUT A TOWEL OR WASH CLOTH BETWEEN THE ICE PACK AND SKIN.
? Most MS injections are shipped with Cold Gel Packs that are ideal for us to use.
? Fill a Zipper (Double Zip is better)closeable storage bag with one part rubbing alcohol and 3 parts water. If you want a blue tint, add a few drops of food coloring. Squeeze out as much air as possible before closing bag. Compress bag to mix the two liquids then lay flat in freezer for a few hours. It will freeze into a reusable, flexible gel pack that can mold to any shape. I make up some in the snack, sandwich, quart and gallon sizes and then select by area of pain. NOTE: For longer lasting ice packs, either double bag them or use vacuum seal bags and just seal the bags by hand, no vacuum required.
? Saturate a dish, hand or wash towel, wring it out and put in the freezer for an hour or more. When you remove it from the freezer, just give it a twist it over your sink to loosen it up. The towel will stay cold/cool for a long time.
May God Bless you both in your journey to Mayo Clinic. I was at Mayo in 1991. Please encourage your daughter to get online also. There is much help and encouragement here for MSers.
I use a heating pad to treat my pain, and with great success. I never tried ice since heat did the trick for me. Massage is also worth a try since the pain might stem from muscle spasticity.
I know you don't want to go the medication route, but baclofen and heat work together very well for muscle stiffness, and any MSer would benefit from a regular massage. Gabapentin and Lyrica are very effective drug alternatives to treat neuropathic pain if you ever want to go that route in the future. For a short time, I used Lyrica for increased pelvic/thigh pain and it did help. Neither drug is a narcotic, they are anti-seizure meds. It was a temporary need and I don't use it anymore. Just a thought.
Hi Kim Thank you for your suggestions as well. Do the medications you suggested need to be taken on an ongoing basis or can they be taken while her symptoms are bad and still benefit her? Do you think massage should be in the afflicted limbs or more along the spine where lesions might be? that might be a silly question but to me it makes sense to try to stimulate the nerve receptors in the spine area. We will also try the heat path to see if that helps. dp
When we suffer from MS, muscle spasticity is a common symptom, most often in the legs. Massage will loosen those tight muscles, and the more areas you massage the better. Massage relaxes us when our damaged nerve signals no longer instruct our muscles to relax. We can experience spasticity in legs, arms, hands, feet, torso, neck, back, really anywhere there is a muscle. So a full body massage will reap the greatest benefits.
Massage will not help damaged nerves in the CNS, nor will it help nerve inflammation. Steroids quiet nerve inflammation, and those should only be used temporarily. Massage is for muscles, and, of course, our circulation will benefit from such stimulation as well.
Symptom meds should be discussed with her doctor. If indeed she is experiencing muscle spasticity, then muscle relaxers such as baclofen, zanaflex, and flexeril, to name just a few, might help. The dosage starts low and can be increased and decreased to find the level where muscles are looser, but not so loose that she is too weak to walk. It takes a while to find the right dosage, but the upside to these drugs is that you can stop them immediately; it isn't necessary to wean yourself off them.
Pain meds such as gabapentin and Lyrica must be titrated over time; that is, you start with a small dose and increase it on a schedule the doctor provides. There is a cap on the dosages for each. If you decide to stop the drug, the patient should be slowly weaned off it, much like you would with oral prednisone.
You can stop or start any drug if you suspect it is no longer needed, not working, or if the side effects are too unpleasant.
Hope this helps.
Thanks for your Reply!
An effective treatment for neuropathic pain & numbness is Microvas Electrostimulation. Treatment is non-invasive and is usually done in a doctor's office. Treatments are usually scheduled for 2-3 times a week for 45 minutes. Most insurances will consider payment with a diagnosis of neuropathy. If you go to their website Microvas.com there is a wealth of information that will explain the treatment and you may be able to find a location for treatment near you.
Also some people have found that applying Capsaicin creme to the painful areas on the foot have diminished the pain. Be sure to wear gloves when applying and wear white cotton socks after applying to prevent the creme from getting on areas that may be sensitive to the formula, especially the eyes and mouth.
Finding the right therapy that gives your daughter the best relief will be a try and try & try again. Unfortunately not all therapies work for everyone. Hopefully when her neurologist and she decide on a treatment plan it will control the advancement of the disease and prevent worsening of her symptoms. Advances are being made every day and I am hopeful that one day the meds that I need to take that gave me my life back can be reduced or eliminated; but until the its all about staying the course that works the best.
I wish you both a safe journey and many blessings,
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.
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