My toes are clenched up and my doctor had never seen anything like it. Anyone have any ideas?
Question posted by sara12345 on 28 Sep 2013
Last updated on 8 August 2020
Anyone had this problem or have any ideas to treat it? My inner 3 toes are clenched up 24/7. It hurts so badly that it makes it hard to sleep. It makes it difficult to walk. Also the clenching is so bad that my big toe constantly overlaps on top of the toe next to it. My leg is starting to hurt more as well, probably because of the strange walking and my whole leg is tensing up from the pain. It feels difficult to tolerate it.
Anyone know any remedies? My doctor didn't really know what to do, but sent me to physical therapy which the therapist wasn't sure she could fix it. The doctor also increased my Baclofen which is a muscle relaxant and gave me Lidoderm patches. Would a nerve block injection help it? It is on the same side as my stroke which was 5 years ago.
The toes have been bothering me for the past several weeks, but suddenly got really bad this week. No numbness or tingling. No, I have not injured my foot at all. So why does the doctor think I need x-rays? I've had way too much radiation. Thanks for any help.
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20 Answers Page 2
DE
Delila
28 Sep 2013
Hi, just a thought, maybe discuss with your doctor the possibility of Charcot-Marie-Tooth disease... It affects the feet. My uncle has it. You can access information from Wikipedia
Votes: +1
KA
kathyhanson
28 Sep 2013
Hi Sweet Sara, OMGosh! That sounds painful. I have to agree with the others that you need to have blood work to check your calcium, potassium and Vitamin levels. Something is causing the tendons in those toes to spasm. One of those foot baths with heat would probably help. Frequent massage of that foot would help to loosen the muscles/tendons, as well. At first I thought about an arthritic condition, but I'm sure you would recognize that. I also thought about the possibility of a small bleed in your brain, but more than just 3 toes would be involved with that. So, that leaves calcium, potassium and vitamins, or maybe pinching of a nerve in your ankle. My dear, you did not give us an easy question! I wonder if Botox injections might help loosen the tendons? I wish I had more to offer to you. Please keep us posted on this. I hope you and your doctor can find the reason for this problem and resolve it. Hugs to you, Kathy
Votes: +2
KA
kathyhanson
28 Sep 2013
Sara, I did a little checking and found that there is a spastic toe condition usually seen in patients who have had brain injuries or strokes. This article gives good information on it. www.pennmedicine.org/orthopaedics/patient/clinical-services/neuro-orthopaedics/spastic-foot-deformities.pdf The photo in this article looks very much like what you are describing. Hope this helps. Kathy
SA
sara12345
29 Sep 2013
I think I found it. Your address didn't work, but by going to penn medical, then the neuro-ortho,,, then the foot thing, I found that SURGERY could correct it. Oh my gosh!!! But thanks for the input. I do appreciate it.
LE
Lelizaberh
2 Nov 2018
Hi Sara & Kathy, I’m new on this app. I’ve been trying to get answers myself as to why in the past few months my toes would involuntarily start moving & I had no control. It was just a few times but now, just in the past few months things have become so much worse. I’m in the hospital a lot, unfortunately. Every time I vomit, my potassium drops to a very dangerous level. I have liquid potassium @ home. Things are still progressing & getting worse. I’ve found in all the years, knowing my own body & being my own advocate has become very important. Definitely have your drs order many tests, especially before diagnosis is given & what you should do, pt, meds ect. Some drs get offended when you ask for specific tests. It shouldn’t bother the dr. You know your own body & information, any info you give your dr to help diagnose your problem, shouldn’t offend the dr.
Narrowing down, some serious medical problems, should be a partnership between & your dr. I’m trying really hard to find drs, especially this past year, that’ll care more about me & some very scary medical issues. It seems lately, I’m hearing more about what the insurance co. will cover. I just had a dr tell me, a particular ins. company sent them a letter saying they can only do labs every 6 months. That’s ridiculous! Actually, those were the 1st words out of my mouth to the dr. I’ve been disabled & very ill for many years, which is why I’m sharing all this info. Don’t be afraid to share your concerns to your drs. It’s your body & literally your life. I’m sorry for such a long story, it’s just hard to hear what some drs do or don’t do. Please try to get as many tests as possible before your given a diagnosis & plan for the problems you have. Low potassium can definitely cause severe sharp pains & cramping in the feet, legs ect. Again, so sorry to have gone on about so much. I’m so sorry you’re going through this. I know how excruciating these pains are. I truly hope you get the help you need & answers that will help your pain. I wish you all the best.
SA
sara12345
3 Nov 2018
To: Lelizaberh, I am so sorry to hear about your disability and illness for years. You don't say what it is, but that's okay. I put in a friend request to you in case you want to discuss it privately. If not, it's entirely alright. And I am also sorry to hear that you are having problems with your doctors and insurance coverage. Perhaps you can find different doctors--maybe not.
My toes clenching were caused by my stroke. Botox helped it until I couldn't have it anymore. Then I was in the hospital for another problem. It was the week from hell--far worse than when I was in the hospital with a major stroke. But the medication that helped that problem helped my toes. It was Flexeril. I have been taking it ever since. And I am blessed with the best doctors. I get rid of the bad ones.
I really hope that you will get a proper diagnosis, get more relief and find some peace. I do wish you the best.
I get the toe problem too but never 24/7. That's terrible. Mine is usually from low potassium. Like Karen said get blood work done. I do calf stretches barefooted to help get toes stretched. Good luck and keep asking for ideas.
Votes: +1
SA
sara12345
28 Sep 2013
Thanks for your response. And interesting to hear that your problem was from potassium, as Karen suggested. Glad to know that I'm not the only one.
BU
butterflylynn
28 Sep 2013
My dear friend, I have that problem with my feet alot & it hurts really bad. Did you talk to your pain mngmnt dr. about this? Also have you noticed by increasing your Baclofen if it eases the spasms up & how much are you taking? My primary dr. also did xrays at first because he thought that it could possibly the bones were growing into a awkward position. And the only two that were not were the toe next to the big toes which have been hammer toe. They did surgery on the hammer toe on one foot but it did not help the cramping up. My PM dr. said it was due the FM & the muscle spasms so now I massage my entire foot & especially my toes as soon as I start to feel the spasms before they get horrible. Also I have a water foot massager that has the heat option also & I put Epsom salt in the water & it helps loosen the muscles up & then follow up with some gentle stretching of your entire foot.
I constantly stretch my toes to help so they don't curl up. Oh & by the way I apologize for not answering your email but I am working on it now & I explain why. Kathy
Votes: +4
SA
sara12345
28 Sep 2013
Kathy, Thanks for all your tips. I wonder that your doctor didn't think that the spasms are not from your many strokes. My legs still cramp up from my stroke 5 years ago. I did get some exercises at my PT appointment which are very difficult to do, but I will keep trying. I have been trying to stretch my toes before the PT, but it has done absolutely no good. Don't worry about answering my email right away. I can't get to emails right away sometimes either. No worries with that.
BU
butterflylynn
28 Sep 2013
Sara, I asked my neurologist about that if it might be because of my strokes. She said it might be that due to the spasms but more than likely it was from the FM. Due to the fact that there was more than likely there is a trigger point in my feet or legs that needs to be released. After the warm for bath when I start massaging I usually locate a few trigger points & if I get them to release it helps relieve the curling of the toes. Another technique my PT taught me was to use a tennis ball & roll it on the floor & place your foot on it & roll it all around the bottom of your feet. The thing that helped me the most was the water foot massager with warm epsom salt. The epsom salt helps relieve the muscles from cramping. Take care my dear friend, kathy
SA
sara12345
28 Sep 2013
Thanks for the extra tips. I am not aware of what a water foot massager is. I too have fibromyalgia, but the cramping is only in my stroke leg, and now my toes. But interesting idea for me.
Ouch, ouch, ouch! You need a complete blood work up. Short on calcium, vitamin D and possible potassium. Walk as best you can as it will keep the feet from clenching permanently. I get severe hand clenching when I have neglected calcium and didn't know my vitamin D was low. I keep working the muscles to free them up. My doctor says it is electrolytes and holding the same position too long. Drink tons of water and use chewable calcium to get in your system quicker. Be sure you drink milk with calcium or some other high calcium food. It will hurt, but these kinds of conditions can be serious.
By the way, of it were me I would get a doctor who has been out in the world a bit more. If he says a bar of soap at the end of the bed, I would report the guy. My doctor diagnosed over the phone. I had follow up blood work the next day. Let me know what they find. Feeling your pain, ouch! Karen
Votes: +5
SA
sara12345
28 Sep 2013
Thanks so much for your tips. I currently take 4,000 units of Vitamin D and eat a LOT of calcium foods every day. Recently my blood levels of those were fine. I'll have to look up the potassium levels. But I will ask my doctor about those blood tests when I see her this Wednesday. I saw another doctor since I couldn't wait until Wednesday to get some relief for the problem.
SA
sara12345
28 Sep 2013
Karen, And thanks for alerting me to the problem possibly becoming permanent. I really jumped on the problem out of desperation feeling like I couldn't stand it. And massaging and pulling on my toes hasn't loosened them up at all, but hopefully the PT exercises might help.
EN
endlessPred
28 Sep 2013
Hi. Forgot to add that a warm foot bath can help. Don't give up massaging until you loosen up. It hurts to do this, but it hurts anyway. And be careful what you wear on your feet. No heels and I stay barefoot in the house. Feet exercise better when you can feel the floor and weight bearing even when hard to walk does help. Also helps the calves. I get cramps if I forget to do that because I am having a tough day. You may notice a connection as well.
Eating calcium rich foods is never enough calcium. You just can't eat enough broccoli or drink enough milk. A supplement is just fine as long as it is a good supplement. Even tums are fine. I will be interested what your doctor thinks. Hang in there. Karen
EN
endlessPred
28 Sep 2013
The X-Ray is to watch for deformation of the foot which can happen with diabetes and some other diseases. This then can cause drop foot, need for amputation and lots of ugly events. This way he can rule it out and find other possibilities.
SA
sara12345
28 Sep 2013
Karen, Thanks for the extra info about the x-rays, walking, etc.
Both my nephrologist and my primary care physician said NOT to take calcium as too much calcium is a problem. And my calcium was too high when I was taking calcium supplements. Since then I have had my calcium checked frequently and it is always towards the high side of normal. Doctors are now saying that most people get plenty of calcium and that women should not be taking calcium as a general rule. Sara
EN
endlessPred
9 Oct 2013
Glad your blood test is fine. However, there are plenty who do need calcium. Mine stays low because of the thyroid removal. It is needed to help metabolize the Vit D.
FYI: They have found in studies that people who have naturally high calcium, over the normal range, have a greater incidence of heart disease.
SA
sara12345
10 Oct 2013
Karen, Thanks for your continued comments. My calcium is in the normal range, and my heart is the ONE area of my body that is in excellent shape. That's from all the heart tests and the fact that it saved me during my stroke to prevent me from being paralyzed and not able to talk for the rest of my life. You are such a gem on this website. Sara
