Author & Founder Lorna Moorhead

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Motherly Advice from MS MOMS

Tightness of Chest.
Ways to help with lower back pain & burning. 
Can the heat make me worse? 
Ways to exercise weak legs.
Hot coals and pin pricks..
Are there vitamins for fatigue?
A relapse from hot showers?

A relapse from hot showers?
Question: I just recently had a really bad relapse. The doctor that I had seen in the emergency room as well as my specialist advised it was due to heat...I like my hot showers and I like my warm clothes. In Canada, you need to wear warm clothes especially in the winter. How can I control the temperature of my shower?

Answers: 
MARY C: Hello, I always liked my hot showers too, I learned real quick too HOT & I had to take a nap. After 2 different naps on the bathroom floor YEAH!! turn the shower temp down. Sorry sad but true now it's a warm shower. You can do it I have faith in you.

MSDEB: There's nothing like a hot shower or a good soak in a hot, bubble bath. But, let's face it - those days are gone. You can still shower or soak in warm water. I like to light some candles, fill my Jacuzzi with bubble bath and warm water and soak for about half the time I normally would since the water cools quicker. If your bathroom is cold try putting an electric heater in the room on low. It will make the bath more enjoyable once you get out.

Cindi: I too enjoy a nice hot bath, shower or even a soak in a hot tub. However, sometimes, some of the things we like just aren't good for us. You need to turn the temp down in the shower and add more cool water. Another thing you can do is to use a cooler temp at the end of your shower before you get out. Dressing in layers may help reduce the problem with overheating from your clothes. Put on items that you can take off once you get indoors. My husband recently purchased me a cooling collar, it's battery operated and has a reservoir for water. It turns into a personal air conditioner. I use this in the summer of course, but also in the car when it's cold outside and everyone in the car is cold but me. Keeping cool on the inside will also help, by drinking cooler beverages.

Lorna: Okay, I have to poke my nose in on this one. I have heard of symptoms worsening due to heat, but have never heard of a hot bath causing a relapse (or exacerbation as they are sometimes known.)

Heat and stress have been known to worsen the symptoms of MS but this worsening goes away rather fast. A relapse is when you have an onset of new symptoms that usually lasts more than 24 hours. I find it odd that you would be told your showers caused your relapse. Sure they might make you feel a bit worse for awhile, but they shouldn't drive you into a full blown relapse!

If you feel worse when coming out of your shower, then next time turn down the heat some, or don't stay in so long. I, too, relish hot steamy baths, so I time myself. I set a timer in my bathroom and make sure i do not stay in too long. If I do, then i pay for it by turning into a pile of human spaghetti. At this point my husband has to literally, drag me out.

Let me finish by saying that I am not a medical professional and may be incorrect in my information. 

Take Care.

Are there vitamins for fatigue?
Question: Hi, I was recently diagnosed with MS, and I am dealing with it ok I guess. My problem right now is I am so very tired. I am a teacher, no children, but at school I almost fall over because I am so tired. Is there anything I can do to help. I already take a Prenatal vitamin, do you think I need more vitamins? What about any items for quick energy?

Answers: 
Hi Yes there are things that your Dr can Rx for you to take, talk to him/her and tell him/her what you told us. When he/she is fully informed he/she can treat you much better. Please talk to your Dr as soon as you can, in the mean time try to rest as much as you can & start a exercise program. Simple stretching to begin with will help, then contact your local NMSS they will send you booklets on MS & Exercise & any thing else you want. Simple exercises will help your fatigue some. God Bless & Please let us know how you are doing.

MSDEB: There are a number of options to help boost your energy level. However, what works for one may not work for another, so if you have to do a little trial and error don't be discouraged. Here are a few medications used for fatigue: Amantadine, Zoloft, Provigil and Cylert. You mentioned taking a pre-natal vitamin so I'm not sure if you're pregnant or trying to get pregnant, but you would need to discuss all these medications with your doctor and keep that in mind. Something I used to do when having so much trouble with fatigue: Vitamin E drops. You can buy them at the drug store and you administer it under the tongue for quick absorption. Hope this is helpful. Let us know how you're doing.

Cindi: There are many things that can be done for fatigue now. Some docs will start  with an antidepressant, which will usually improve your sleep patterns at  night, thereby giving you a better nights rest, and hopefully less fatigue  during the day.  Another option is the medication Symmetrel or amantadine, this was initially  use for Parkinson's Disease, it's thought to improve the transmission of the  nerve impulse and decrease fatigue in that manner.  Newer medications include PROVIGIL, originally developed for narcolepsy, and  found very effective for the fatigue in MS. Although, some insurance  companies will not pay for this medication as use in MS is not listed as one  of its official uses. Sometimes, you can appeal this decision by a note from  your physician, and letting the insurance co. know that it will keep you  working and off of short term disability.  RITALIN or CONCERTA, which is a sustained acting Ritalin helps tremendously.  It does provide relief from fatigue, but may also need to be increased dose  wise as a tolerance is developed.  Much controversy surrounds the use of CYLERT, as it can have damaging  effects on the liver.  You need to talk with your doc. Let him know that fatigue is a major factor,  and that you need to find something that will help you through out the day.  A good, caring neuro will help you, or perhaps you can ask your primary care  doc if need be.

Hot coals and pin pricks..
Question: I am under the care of a Neurologist who is running tests.  little over a month ago I developed pin-pricks, bee stings, burning coal spots, hammer to the joint pains, and some transient numbness and tingling.  These symptoms are randomly hitting every place on my body from scalp to toenails.  Neurontin 900 mg. helped for the first two weeks, but now I have had to double the dosage.  Does any of this sound familiar to any of you?

Responses: I am so sorry that you are having problems of this nature at this time of year. I have had all these symptoms except the numbness on one side, it was total on both sides from shoulders down to my toes. I believe that Drs who don't know much about MS are very afraid to say even "it might be". It is a nasty disease, it is an unpredictable disease, BUT you don't die from it you LEARN to live with it. THAT'S WHY WE ARE HEAR. Come any time to talk, ask questions, listen, learn & have a shoulder to cry on, we are hear for each other. God bless Mary C.

This all seems familiar to me. The tingling, burning, numbness, etc. have always been a part of my life with MS. However, you must keep your Neuro posted on all new symptoms. I take 600 mg of Neurontin three times a day but it took me a while to work up to that dose. My symptoms tend to range from head to toe also and that can be frustrating. MS is a crazy disease that strikes each of us individually. We need to be our own best advocates. Read the materials that are available, talk frankly with your Dr and your Neuro. There are many medications out there and sometimes it takes some fine tuning to find the ones that work best for you. Most of all remember that you are not alone. This is a great place to come for friendship and positive reinforcement. Take care - Kookcow

It sounds very familiar, but remember that each person is different. So, don't jump the gun yet and assume it's MS. I'm glad to see you're already with a neuro. and he's running tests. The fact that he's put you on Neurontin shows he recognizes you are in pain and is willing to do something about it.. So, you're fortunate in that respect. I take Neurontin too and have had to play with the dosage a bit from time to time so if the current dosage is not helping tell your doctor. Neurontin can be taken in fairly high doses. Once the pain subsides you may be able to reduce it somewhat. I hope you will come back and let us know how you're doing. MSDeb

Ways to exercise weak legs.
Question: I am 41 years old and was once a very active person who always exercised and danced. I now suffer from a weakness in my legs although I am still fully ambulatory and can hide my MS quite well. I am in desperate need for some sort of exercise. I recently took a non MS weights class but had to skip the long portion of the class which concentrated on leg exercises. What does everyone do for exercise - physical therapy, personal training? Thanks so much.

MSDeb: Dear 41, Welcome to my world! It's an on-going problem! You may be setting your sights a little in taking a class. It's easy to get frustrated when you see others around you working up quite a sweat and pushing it to the max. I used to run 4 miles a day. My attitude for several years was, "if I can't do the same level of work I don't want to do anything at all." Not good. Couple of suggestions: walking is great exercise, on a treadmill at the gym if you want to be a part of the exercise community or in your neighborhood or local park. I take my big old golden retriever with me. Now, when I don't feel motivated to walk he looks at me with those huge brown eyes, gives me a nudge and off we go. Recumbent bike at the gym is good - set on a low resistance. If you're just dying to do some weight training, do free weights and light weights on the machine on your own. A weight training class, any way you look at it, is going to be too difficult. Hope this is helpful! MSDeb

Gwen: I too, was once extremely active, my main activity was body building, after my last major flare up i am unable to lift more than 5-10 pounds, but i keep curling away! i now swim for my exercise. after being in a chair, once i lower myself into the water is wonderful. i feel so free, and it is so easy to do! swimming exercises every major muscle group, burns calories easily and revitalizes your soul. very easy on your joints and tendons you can go at your own pace, if you do not know how to swim, take lessons or just stay in the shallow water, holding onto the sides of the pool and kicking your legs, the gravity of the water is in its own way a form of weight lifting. you can also join water aerobics, don't forget to stretch before and after swimming!

Tightness of Chest.
Question: Have any of you experienced an inability to breathe that causes you to black out? This happened to me and after going to the ER and later contacting my Neurologist, I felt like I was still in the dark. He told me when this happens again to take deep breaths, even though I couldn't breathe? Do others experience this along with that tightening around the chest? What has been your diagnosis? Also, do many experience an MS related Narcolepsy?

Cindi: The chest tightness you feel and the resulting shortness of breath can be a common symptom in MS. Some people experience it frequently and others not at all. I thought I was having a heart attack the first time it happened to me. Your doc is right, that focused breathing, concentrating on one spot, breath in slowly, through your nose counting to five, then exhaling, through pursed lips, like you were blowing out the candles on a cake, while counting to seven. This will help that feeling pass. You aren't actually short of breath, it's the messed up sensory input to the brain, another of the fun things you get with MS. However, if you find the symptoms change, are accompanied by sweating, nausea, vomiting, pain that radiates or seem much different from the other times, you do need to seek medical attention. You know how you react to the MS symptoms, what's usual for you and not usual, don't let some doc/nurse or other tell you it's all MS when you know it isn't. Take care, hope this helps some.

Mom2All: The not being able to breath, tightness in your chest and back sounds like an MS Hug. But there are things that can cause this that are very serious. Check out everything before you call it an ms hug. Neurontin has seemed to help me with this symptom. The falling asleep all the time is fatigue, and is common in MS. I do not have that problem right now. If your Dr. will not help you get another Doc now. Sounds as though you are having some serious problems that need serious attention. Sorry I could not help more. Mom2All

Gwen: Oh my yes. I have experienced shortness of breathe (never to the point of fainting, but almost) it is a horrible feeling. My doctor says it is a MS symptom. MS can affect the diaphragm muscle in severe cases, the tightness is a classic MS symptoms, sometimes i feel like i am being hugged way to tight and not by anything i would want to hug me. i feel like its a dark side of MS and one i do not like to think about to much, with me the feeling passes over a short period of time. narcolepsy...i could write a book. the flare up i had about 2 years ago when i lived in Florida consisted of excruciating lower back pain, left foot drop and what i then thought was narcolepsy. i read ever book in the library on the subject and approached my doctor. of course this was all undiagnosed MS) my symptoms were as follows. couldn't sleep or just drift off into a light sleep, only to be awaken by what i thought were intruders, i would hear noises. i was forever waking up my significant other and a complete check of the house had to be made, searching for the unknown intruder. the sounds were so real, i even called 911 when alone. i also would hear people yelling out my name. this went on for quit some time and i started to sleep walk, actually tied myself with string to the bed after finding myself out side naked (go ahead and laugh now)

It was the most frightful time in my life. I went to a sleep lab and had to stay for several days. All the narcolepsy symptoms fit, all the docs, thought I had it except for one tiny clue. I did not fall asleep in the day time while eating or driving or in the middle of conversation.

They gave me a sleeping pill, the dx. At that time was chronic incurable insomnia. one other thing I want to add is when I started to fall asleep I would feel like I quit breathing. I felt to tired to breathe. However, it all went away for several months and I slept fine until the next time I had a relapse. It hit again and this time even worse. by this time I was back in Kentucky and had other symptom going on, back to the sleep lab. Nerve transmissions in my brain were not getting to where they were supposed to go. makes perfect sense to me now, after the MS dx.

There is good news, I now take a sleeper at night and rarely have any problems, I sleep well and I try to make sure to get enough rest thru the day and this seems to help. You are the first person I have had the pleasure of talking to about this problem. Please feel free to e-mail me any time. Lorna can give you my e-mail address.

Just a foot note, I rejected the idea of a RX. Sleeping pill, I have been assured without taking it I would never sleep right without increasing my REM sleep. one time I thought I was better and stopped taking the drug only to find myself worse than I have ever been. The final dx. from my doctor was the MS was causing all of the above symptoms. good luck

Ways to help with lower back pain & burning.
Question: I recently was diagnosed with MS. My legs and back have been affected. Does anyone know of ways to help with the lower back pain and burning?

Cindi Says: Ann, If you haven't already, you need to talk with your physician about these symptoms. The back pain, could very well be due to spasms, which is treatable. The burning pain you describe, sounds like it may be nerve pain, the most common complaint being a burning. Also very treatable. If your physician hesitates, or tries to tell you that MS does not cause pain, then you need to find yourself another doc. as soon as possible. Gentle exercise on a daily basis, combined with any medication recommendations your doc has can help minimize any symptoms that are very troublesome. Many times, individuals with MS are hesitant about going for a 2nd opinion, or changing docs., but wouldn't think twice about changing mechanics if they didn't repair their car properly. You need to have faith in your physician, be able to talk to him easily and know that he'll take his time with you. Please contact your doc in regards to both of these symptoms. I hope you're able to find relief soon. Cindi

Mom2All replies: Dear Ann, Lower back pain is bad for me too. I have even had pain in my lower back compared to labor contractions, those aren't fun. Here is what helps me ... I start the day off slow. It is so hard sometimes just to get out of the bed it hurts so bad. First off lay in bed and try to stretch slowly, ball up into a ball with your knees into your chest and then straiten back out and repeat this a few time before getting up. When I finally get out off bed it is off to take meds while in a warm bath. YES A WARM BATH I know hot baths aren't good for us but neither is lower back pain. I take neurontin and zanaflex for this had to work up to a dose that worked though. Still the pain doesn't completely leave me until it is late afternoon and by then I am ready to get back into the bed only to wake up and start over. I will tell you that my meds for this have greatly improved my pain problem. ask your doc. This was a great question I thought I just had a bad back or something but I have heard so many people with the MonSter have this very same problem. Thanks a bunch I hope I may have helped in some way even if it is just to say you are not alone in this one, Hang in there,Mom2All

Nurse Gwen says: If you have problems with walking this may cause pain in your lower back. the muscles become overstrained. at one point i was dragging a leg just a little bit, hardly noticeable, and i had horrible lower back pain. however, my concern is for you to check with your doctor to rule out the lower back pain that results from urinary tract infections. remember that not all of our pain can be contributed to MS, any new or unusual pain should be reported immediately to your doctor. my own personal experience is that my lower back has a feeling of burning or as i refer to it. ice back. I t is either a burning or a cold feeling. my dr. says this is from my MS. MS causes different kinds of sensations in your body and is interpreted differently by different people. good news, if it is your MS, there are medications that can help with the sensory pain.

Can the heat make me worse?
Question: I was out in the sun today watching my son march in a parade, when I started feeling weak and not sure of my balance.  I have not yet been told that I have MS for sure. There is one more test the Doctor is going to do on the 13th of the month. Is this part of what I have to look forward to?

Advice Panel Answers:
Mom2All writes: Holly, First off I am so sorry to hear you may have MS. And to answer your question about if what you experienced with the sun is part of what you have to look forward to... Try to grasp a hold of this...Don't think of looking forward to anything. Go with the flow. Don't wait on things to happen to you but expect anything and accept them for what they are. Attitude plays a big part in what you experience. Adapt to your limitations. I learned the 3 A's from an old friend of mine in an MS chat room once and try to hold on to them to this very day. They are: ACCEPTANCE, ATTITUDE, AND ADJUSTMENT. If you have problems with balance ...GET A CANE. That was a hard thing to swallow for me but I did and am thankful for it. I am not by any means trying to diminish the affects of having MS for you because I myself have cried many times over the fact I cannot go play outside with my children when it is hot, I can not go to the beach and lay out in the sun ,I can not afford to get my whole house cleaned in a day ,I can not do a lot of things I used to do and it is very devastating. But, it is NOT the end of the world just the end as I knew it. One more thing. as if.. you need another blow...MS causes depression from all sides you will be depressed because you have MS and then the MS itself causes depression ,the you get a load of meds that will cause depression SO...If you feel you need an anti-depressant GET ONE!! Hugs yourself and your son for me, Mom2All

Stacy Says: Heat does tend to bring our symptoms out. It will make symptoms you have had either re-appear or become worse during the time you are overheated. Keep this in mind while planning outdoor activities. Keep cool drinks and find the shade or a cool breeze. 

Cindi Replies: The heat can be quite devastating for so many of us with MS. It makes any outdoor activity a challenge. That doesn't mean that you have to give up all of the outside activities, you just need to learn to plan around them. Try to do them in the morning or late evening when it's cooler. Be sure to be rested and fully hydrated before you go out. Utilize a hat, or umbrella if necessary to be out of direct sun light, this alone can decrease the temp. by 10 degrees or more. One of those hand held fans with a spray bottle can be quite refreshing on a hot day. Be sure to drink PLENTY of fluids, using one of the sports drinks if you perspire a lot. Get to cool off inside when you can. Try using a cooling collar or vest, or even making your own. Supplies are readily available at any home imp. store with a garden center. Be very aware of what the heat does to you, so at the first sign of problems, you can get to a cooler spot. I know how important it is to support what your child does, it's also important to take care of yourself. Hope you're able to continue with your summer activities.

Nurse Gwen L.P.N. says: HEAT. This word should bring all kinds of differently connotations to the average person's mind. To those with MS, it can just be EVIL. The heat is my enemy. It can make me go for a normal speaking person to someone that cannot find words. It make me confused and disorientated. It makes me weak. When you add it's friend humidity, they pack an even more powerful punch. Heat slows down nerve transmission. Placing a person in a warm tub used to be the way they diagnosed MS, long before advanced technology. If the person had a worsening of Ms after a hot bath, then the diagnosis was made.

However, it is vital to understand this is only a temporary state. Keeping cool and cooling down after being overheated will resolve most complications. Heat does not cause relapses (although you may think you are going into relapse when you are overheated.) I stay cool at all cost, the heat also sets off pain in my eyes and I get a headache if I get too hot. Thank God for air conditioning!