Exercise Makes SFN Worse
 

Every article and post I have read claims that exercise helps SFN.
My case is just the opposite and I'm curious if anyone else has the same problem.

I definitely have SFN verified by the skin punch test. I have tried many times using an exercise bike and/or walking. I start out very slowly, but every day gets worse and I end up in so much pain after a week or so that I end up going to bed for a day or 2.

I've given up on doctors and pain meds and am wondering if there is anything that goes hand-in-hand with SFN (and Graves) that might cause this. I'm at my wits end and don't know where else to turn.

Thanks :)

I've had the very same problem. Exercise sets off all my sensory symptoms - buzzing, stinging, and burning.

My approach has been to scale back on everything. Try something easy and wait a few days to see how my body responds. My symptoms have a delay to them sometimes. I might experience the pain either later that same day or up to 72 hours after the stimulus. Keeping a journal has been very useful to track this.

Guess I am not the only one. Sorry you're in the same boat as I am.
My only option has been not to exercise at all. The more I rest, the better I feel. The more I rest, the better I sleep at night.
But according to my doctors, I MUST exercise. They just don't realize how painful it is.

Is there a chance that something else could be causing this rather than the SFN? I've seen a neurologist and a rheumatologist. They both say there are a lot of tests are "off", but nothing really stands out as extreme. That's all the farther it goes.

Thanks,

LM

Look at this issue in a different way.

Exercise is helpful to prevent blood glucose problems which can lead to diabetic neuropathy.

Exercise keeps muscles and the heart strong.

Exercise improves circulation in the body, and for those with poor blood flow (and hence neuropathy developments), it can help in the long run.

BUT.... People who have something in their blood like some drug or toxin, or heavy metals, or autoimmune disease, will
have MORE blood delivered to those nerves who will react more.

If a person has an inflammatory problem, arthritis or some other inflammatory issue, then exercise may inflame that process. Stress increases inflammatory cytokines (Cox-2 family).

If a person has some problem not recognized in the feet and legs, some compression issues, tight shoes, broken sesamoid bones, spurs on the ankle, psoriatic arthritis, neuromas, then surely the feet will hurt more with exercise. For these people swimming is often a good compromise.

But just having shoes laced too tightly can cause all sorts of grief in the feet... so having a really good podiatrist evaluate your feet is a good way to screen for the negatives.

I exercise a lot and am very fit. Unless I can't walk or am disabled I'm going to continue to exercise. Exercise relieves my symptoms although thankfully at this point they aren't that bad and getting a little better.


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Yes, exercise makes mine worse. Lying down makes mine worse. Sorry that
it is this way.
Some yoga has helped me the tiniest bit.
Walking in a warm pool also helps.
If I exercise like I did prior to my symptoms I pay heavily for it.

This all is such a challenging paradox.
:eek:

Yes, exercise makes mine worse. Even the slightest exercise like doing stretches for carpal tunnel. my arms sets off burning. Lying down also makes mine worse. That's when the stinging, tightening and heaviness really come on.

I stand up paddle surf, in the surf (ie, in waves, not flatwater), almost every day, for 2 hrs at a time, if not a little more. The Dr does not want me to do this, and I suspect I know why: at the end of those two hrs, I go straight to bed and/or mope around the house the rest of the day, too exhausted to move.
But, it's how I choose to deal with my disease. Surfing is what makes me happy -- and happy beyond words -- so why would I want to cut down on it, knowing that my disease is going to make me stop at some point anyway?
And, yes, there are times, usually at the end of the day, when my feet are burning to high hell and are prickly numb like no one's business and I swear that I'll take it easy and not surf the next day. But then the next day arrives, my feet seem somewhat better, so off I go, without fail, to catch waves.

(Here is a story I wrote about my case of CIDP and addiction to surfing: http://www.outsideonline.com/1922561...ithout-feeling )

One thing surfing has not done is increase my muscle mass. Due to CIDP, my leg muscles are almost entirely atrophied and my arms are skinny as toothpicks. That said, I have to feel that without surfing I might be even worse off than I am.

So, those are my thoughts, for what they're worth.

This is somewhat the way I feel. I loved to hike and walking in the woods makes me happy so I try to do as much as I can. I know I won't be doing it much longer. At the end of a walk my husband has to lift my feet into the car.
It is basically impossible to increase muscle mass with the disorders that cause atrophy. Mine is hereditary. Exercise may slow the rate of progression down a little

No one here is saying that you shouldn't exercise if it causes no ill effects, just that it may not be the panacea that it has come to be regarded as by doctors and the popular press.

Awesome story!! Glad you are getting out there.

Welcome LMPinkereton. :Wave-Hello:

Exercise always makes mine worse too. If I exercise a little, I experience a mild flare-up but if I push myself at all, my body attacks me and it takes days to recover. I do 15 minute "workouts" now, slow and easy and that's about the best I can do.

I've got the toothpick arms and legs too, especially lower calves/ankles...they're just skin and bones now.

I understand why you still surf. I would too if I could. I think we should all do what we love for as long as we can.

Re:Exercise
 

Hi all,

Nice to hear some of you getting out and still exercising! I will use you as inspiration in my neuro journey. My experience so far (10 weeks into this), has been difficult. I am a very active, otherwise healthy young (26) female. I am used to doing high impact exercising when I am committed to a exercise regime. As for now, it is very difficult to walk to my mailbox some days. I have tried slow, steady walking and notice that I must walk short distances. I have done one mile since this ordeal and came home physically DONE, mentally, not so much but my body will not allow me to go further. My calves CRAMP badly, my legs feel stiff, it seems my circulation decreases, and my heart rate feels through the roof. And yes, I feel that it absolutely triggers my sensory and muscular symptoms. My feet and hands certainly burn that night and the legs cramping and muscle twitches are intense at night. Last week, I was determined to incorporate exercise back into my life and started "beginner yoga". Ten mins in I had to stop. My hands and arms were burning and hands and feet swollen. I did yoga three more times with similar results and called it quits, at least for now and until I see a neurologist. I just don't feel confident or comfortable exercising at this time. Hoping I can see a physical therapist or my doctor will give me insight so I can get back at it. EXERCISE IS MY THERAPY and stress reducer!!

EXERCISing is one of those things that can make neuropathy worst, because your constantly putting your nerves under stress,oxidative and physical stress.

I was really into weight training but I noticed it aggravated my symptoms, or maybe just a coincidence. But i've been too paranoid to work out again so its been 3 weeks now. I might try some light weights starting next week.

I was told that I have sfn based on skin biopsy. I get pain cramps twisting and all in my calf and feet that get caused if I walk more than 20 minutes or so. Forget about exercise can not do it. Do you think this is sfn please?

So far it doesn't seem to be affecting me badly. I take a short but slightly strenuous bike ride each day. It gets me out of the house and is good for moral. It's so beautiful here in Sept/Oct.

Hey Jake :)
 

Same here. And every time I try exercising, I am in bed recovering for days.

Mine as well. :confused:

It just so happens that I have a doctor appointment next week and I have (finally) decided to tell the doctor to either do something to help me, or I want a new doctor.
I have been through the gabapentin, lyrica, tramadol route. I've done the diet/exercise route for years and nothing has helped. Right now I am taking nothing for pain because we are out of options. The doctor seems to think I'm feeling fine, but realistically, I am really at the end of my rope. Don't think I can get through a winter like this. There has to be something else he can do.

So how do I get it through to the doctor's head that exercise makes it worse without sounding like a nut case. He has always looked at me with disgust that there must be something I can do to exercise. He insists that exercise is the ONLY thing that will help.

How can I express to the medical people that this has gotten to a critical phase.

Sorry to be so long winded, but so through with this.

Hey LM
 

EXERCISE IS MY THERAPY as well! My suggestions:
1) Check your shoes (not in yoga obviously). Wear them around the house and see if they trigger anything. My sneakers because of the roughness of the sole effected me. I also can not wear socks in my sneakers (sometimes if I turn them inside out so the smooth side is next to my feet it works.) I had tried dance class and I realized weeks after I had given it up that my shoes were the culprit. Exact same symptoms you are describing. It's still is a challenge to take the class, but nowhere like it had been with those sneakers.
2) Yoga was horrible for me as I have spinal issues and a cyst in my hip that were being inflamed by the weight bearing poses (warrior, back extension poses, etc.) I went to a muscular skeleton Dr who ordered various tests and I now know yoga is not for me and I also know what to avoid.

My neurologist told me it is ok if exercise triggers symptoms as long as it doesn't extend to the next day. I don't know if it applies to the general population or if it was just in my case but I've read similar things on this forum.

Debi,

Thanks for the input. This is why I am at the end of my rope. Yes I did pain management for 2.5 years. Had to stop the pain meds (gabapentin, tramadol, lyrica) as they became ineffective and due to side effects. Now I'm on nothing for pain.
Saw a neuro several times. He's the one who did the skin punch test that came back positive for SFN. He next did a glucose tolerance test, which came back as normal. He told me to come back in a year and he'll do another glucose tolerance test. That was all he did. Nothing to relieve my pain or condition. Never went back.

I was always very active and up until 3 years ago, among other things, did walk/jog 3 miles 7 days/ week. Now if I walk 20 minutes, the pain carries through for 2-3 days. More exercise makes it worse. Rest makes it better.

This is really hopeless, isn't it? There's not really anything that will ever make life anything close to normal, is there?

Thanks

I lived with burn/tingle issues from nerve damage from hip replacement. Most of my thigh is still numb going on 5 yrs. But burn/tingle is gone thanks to Inosine and Sphingolin which I'm taking now about 3 months. I've posted about it here.

I deal with bodywide OA and a hip replacement mess and ibuprofen and Pain RX herbal are my pain controller and other supplements that also help reduce pain.

Many foods exacerbate pain too, work on eliminating sugars and carbs.

My friend who has neuropathy for many years and she realizes now from statins she took WAY TOO LONG, is having good help with grape seed extract she now is taking about 5 yrs. She took all the drugs for many years...now I think she takes tylenol and ibuprofen as needed. I take grape seed ex 20 yrs now.

When we talk about pain management we are talking about more than gabapentin, lyrica and tramadol.
We are talking about heavy hitters, fentanyl, morphine, Butrans, etc. I am on MS Contin, time release morphine, 30mg x 3 daily. I also have oxycodone 10/325 for breakthrough pain. I take gabapentin, baclofen for muscle spasms, and Valium for breakthrough spasms. I am able to walk several miles but can't right now because of open wounds. I posted earlier in this discussion.
I loved walking because it helped mentally but it certainly won't cure or even necessarily slow down SFN. Doctors love to push this exercise thing because it is easy for them, doesn't require anything from them and allows them to push all the blame for your condition back on you. Magazines are full of short, meaningless articles repeating the mantra that exercise cures everything. several new books on chronic pain make the claim that we could throw away all our pills if we just exercised more. Without my pills I wouldn't move off the sofa.
You are a victim of this modern mentality. While it is true sometimes it isn't usually true for neuropathy and your neurologist really should know this.
If your quality of life is deteriorating it may be time to look into something stronger. Nerve pain relief is a trial and error process but I believe there is something out there that will make a difference for you.

I've had to truncate my exercising- my walk from the parking lot to workwas built in exercise, I halved it by moving lots- and my hands have gotten so bad I can't massage my legs any longer.

So I understand the helplessness. I really do. Are there other pain management options near you, facility wise? Perhaps you need next level medication. If your past physician was unwilling you may need to find one who is. It sounds as if you have done a lot to try and mitigate thibgs already.

My best to you,

Jon

While I have trouble walking I have places on my feet that are pain free for the most part. I use that part to ride my bike. I get in a couple of miles up and down hill at dawn when no one is about. It's the only time I get to be in some kind of natural setting now. For someone who spent his life fishing and hiking it's weird to say the least. But for now....

I guess you just have to tell him straight out that the pain you are experiencing is unbearable, and you feel you can no longer live in this fashion.

Ask him if there is a pain management specialist he can recommend or refer you to. There are a large number of different pain medications available, you have hardly scratched the surface with the things you have tried.

The only other option might be a neurologist who specializes in treating SFN - but that's a pretty rare thing.

As far as the medications, unfortunately there are side effects to just about everything. At some point we all have to decide what level of side effects we are willing to live with in order to get some pain relief.

It sounds like you and your doctor should part ways. He doesn't understand neuropathic pain. If exercise were the prevention or the solution, many of us on this message board would never have gotten this disease in the first place. Can you find a new primary? Maybe do some research before you select a new one?

I have trouble walking. General weakness from SFN.....but mainly left side. I have to THINK about picking up my left leg. My husband and I walked around the block tonight which was EXTREMELY difficult for me. I am paying for it now!!!! I can barely move.

I agree. It took me several doctors before I found one who listened and believed me. He is compassionate, supportive and open to allowing me to try anything, switch meds, etc... whatever helps.

Neuropathic pain is so complex and difficult to treat. If they don't understand it, they at least need to be compassionate and supportive of you in your search for relief and quality of life.