Leg Weakness and Mobility Issues

Hello, a lot of what you are describing is what happened to me after I started working out on a treadmill. It was a tightness in my legs making stairs and walking in general difficult. A year and a half later I am dealing with the same mobility issues due to my diagnosis of a very rare autoimmune disease called eosinophilic fascitis. Only 300 cases recorded. Because it is so RARE there are not a lot of studies done to say what is the best treatment. My RA Dr had me on Prednisone for a while until my diagnosis then took me off of steroids and put me on Methotrexate. I am still not very flexible and having same mobility issues. At this point I am a mystery and waiting to see if an increase in medication will help me! It has been a long road. I may go into remission within a couple years so for now I keep on keeping on. No choice! I am 63 and still work full time. I plan on retiring next year. Just learning to adjust and taking vacation and sick time when I can. Relaxing is key and heating pad a daily thing!

@mmurphymxz600
Sorry to hear about your experience.

I just checked the the disease on ChatGBT

It indicates that the treatment you’re currently getting is correct.

I have also had a very rare condition and it makes it very hard to get any information from your doctors because when something is rare, they are not taught about that condition. I had Cutaneous Polyarteritis Nodosa.
That is 3 in a million.

I did all of the research I could on the disorder and ended up teaching my doctors.

I hope you get relief soon.

It has now been a little over a year since your post and I hope that you have found some answers. I thought I would give you an update on myself in case it could be relevant to your situation.

My symptoms of muscle weakness and stiffening since my note to you had only worsened and my doctors were not able to get anywhere. By the fall I was beginning to very noticeably feel brain fog and an inability to think clearly, which was quite scary. It is quite a long story and I will try to be and be as concise as possible. Through research on neurodegenerative disease, quite miraculously, I kept noticing "glutamate" coming up. It is an amino acid found throughout your body in abundance, and is also one of the most predominant neurotransmitters in the brain. Many people are deficient in this who have gut issues, but after further research I learned that people who suffer from neurodegenerative disorders typically have elevated levels of this amino acid in their brain which can cause a problem with movement when not kept at a regulated level in proportion to other neurotransmitters. An article written by Dr. Vikki Peterson, who specializes in Celiac Disease, states in an article that people who suffer from Celiac and a neurological manifestation of Celiac, may also have a problem with dietary glutamate. Glutamate is found in all food, but especially processed food, and high protein foods such as beans, nuts, meats, dairy, also anything that is cooked for long periods or fermented like tomato sauce, bone broth etc. After trying a half a block of Parmesan cheese which has a particularly high level of glutamate, I noticed that my leg stiffness and weakness worsened terribly. After two weeks of giving up high glutamate foods my symptoms resolved. The day I didn't even know I could walk (well) I ran!! It has now been four months and I am feeling better than I have in years!! I am keeping a very careful diet and trying to vary things as much as possible, and keeping very careful proportions... But I am thriving. I do not eat anything processed except for an occasional rice cake and a little almond butter. It is not easy-- but I have my life back and can keep up with my kids.

This information on glutamate I think may may be something to consider for anyone who is suffering from any form of a neurodegenerative disorder-- from MS to autism and ADHD. It is very interesting and something is that many in the medical profession are not aware of. My doctors say that I'm a walking miracle.

I hope that you are feeling better and have found some answers! I don't know if this could be helpful but thought I should let you know in case it possibly could be.

@cmmichaela Have you found a list of high glutamate foods to avoid?

I feel confident you were checked for Myasthenia Gravis. However, if you weren’t, please request a blood test called myasthenia panel. Your symptoms are very similar. Please ask your neurologist to order blood work for MG.

@bayhorse There are foods that I have found that are off limits in general for those following a low glutamate diet:
Aged cheeses (like Parmesan and Roquefort).
Processed meats and slow-cooked meats.
Cured ham.
Certain seafood like scallops and oysters.
Vegetables:
Mushrooms (especially shiitake and porcini).
Tomatoes and tomato sauces/pastes.
Peas.
Fermented foods:
Soy sauce and other Asian sauces (like fish sauce, oyster sauce).
Miso.
Yeast extracts and similar products (Marmite, Vegemite).
Other foods:
Nuts (walnuts, cashews, peanuts).
Bone broths.
Grapes and grape juice.

These are the worst offenders, but ultimately all food contains glutamate. "Savory" foods contain the highest levels of glutamate. The stronger the flavor, the higher the glutamate level tends to be. Also, older food that has been sitting in the fridge or fruit on the counter contains higher levels of glutamate.... Fresh is best! There is a government website available that lists the most common foods and their glutamate content. The idea is not to eliminate all glutamate -- which is impossible and would be dangerous. Each person needs to learn which foods they react to and keep (rough) track of how much glutamate they consume in a day, being mindful of portions and figuring out which foods and combination of foods they are okay with, and which they are not. I can eat small portions of high glutamate foods, for example cod, almond butter, baby spinach (not full grown), etc. I'm hoping I'll be able to tolerate baby tomatoes in the future as I understand there is less glutamate content in those than full size tomatoes.

When researching glutamate, histamine often comes up-- high glutamate foods are also high histamine foods. I wondered if perhaps I had a problem with histamine but I believe it truly is glutamate because I react with worsening symptoms when I am given a steroid to try and knock out inflammation. Steroids drastically increase glutamate levels but decrease histamine levels. Both histamine and glutamate can cause similar issues but it is often difficult to tell which a person has trouble with. Interesting stuff.

I had been eating fermented foods, yogurt, and bone broth to try and heal my intestine from the damage caused by Celiac Disease. I was also eating a lot of fish like sardines thinking that the Omega 3s would be good for my brain (that I knew had been under attack from Celiac causing bouts of paralysis etc). I loved natural peanut butter, and protein rich foods. I thought I was doing the right thing but I was eating and drinking all of the wrong things. These are all healthy foods for so many people, and I do not want people to be afraid to eat them! But I feel there needs to be an awareness about this problem, especially if there are known gut issues or brain issues.

I hope this might be helpful to someone. It is so hard to not feel well and not know why. I am so grateful that a change in my diet has helped me so much. I wish everyone all the best on their health journey.

@cmmichaela, thank you so much for your detailed response to my question. You've been extremely helpful. It is daunting to eat "healthily" and find out that the foods you thought were helpful might actually be harmful. I am a celiac, have big problems with histamine response (way over the top!) and have nerve pain response (from lumbar stenosis and other problems) that varies and at times seems to make no sense. So I will start watching my glutamate.

One question remains, though, that perhaps you can answer or help me find the answer to: In following a low-glutamate diet, is there a limit (a number of grams or whatever) that should not be exceeded daily?

Again, thanks much for all the information. I wish you the best!

There is no specific limit to the amount of glutamate to consume on a low glutamate diet. What works for one person may not work for the other.

I find it helpful to have a good journal (with symptoms) recorded to see if there are certain foods or amounts of foods (or combinations of different foods) that I react with.

Ideally, it would be great to see a dietician who specializes in this, however, I have not been successful with this. The dietician I saw when diagnosed with Celiac was so excited for me when I told her of my findings with glutamate-- but she said I would likely need to see a Functional Dietician with a Functional Doctor to try and come up with a specific dietary plan for me, because she did not have any experience or training with this (and she herself has Celiac and was wonderful!).

The one thing I would be very aware of if going on a low glutamate diet: You still need to get adequate protein.... Which can be challenging on this diet. I at first researched how much protein a person my age with my height and weight as a female would need minimally in a day (I did't want muscle wasting because I hadn't consumed enough protein!) My meals were barebones simple for a couple of months (plain sweet potatoes or a little rice for each meal, salad (romaine) or steamed zucchini for each meal, one hardboiled egg for lunch and another for dinner, and a cup of chicken breast cooked in the instant pot for dinner (when it is ready I take it out immediately, and don't let it sit in the broth for long. I have read that cooking in the instant pot can also cause an increase in glutamate-- I haven't had any issues so I'm sticking with it). Everything I cook is plain. I'll add a little salt and am gradually adding some fresh spices (no dried spices). I am now eating a serving of cod or a little ground burger for dinner. I've also added a little almond butter and rice cakes for a snack. I have a cup of frozen wild blueberries after dinner. I can tolerate baby spinach, carrots, a banana, an avocado, apple or peach with no issues (these can be histamine aggravating though). I add olive oil to each meal (on my sweet potato and salad or meat). I've had a duck egg for breakfast and lunch, scrambled with no problem (considerably more glutamate than a chicken egg). I've tolerated it. I just don't overdo. I try a little at a time and if I do okay, especially with the veggies, I pour it on. I need the vitamins.

Having enough healthy fat is also super important! I'm working on increasing that as well. Olive oil and avocados and macadamia nuts are working for me (they are low in glutamate and actually contain a compound that helps to regulate glutamate.... I just discovered that and they taste amazing). These are really my only fat sources right now which may not be enough as I'm still losing weight. (I'm at a healthy weight and would like to stay where I am but I still seem to be losing a pound or so each month... I have a few pounds that I can safely lose but I've got to be careful.) When you eliminate dairy and most red meat and nuts it can be tricky to find protein and fat.

I'm still learning.... There is so much to learn. I am so sorry for all you are going through. Nerve pain is so challenging, I can empathize. I hope that this might be helpful to you... If you would like to try a low glutamate diet it would be best to find a dietician who can help you so that you make sure that you're getting all of the vitamins, fats, carbs and proteins that you need. I understand if this is not possible though. I cannot afford to see a functional doctor, so I am navigating this on my own trial and error. I'm glad that some of this has been helpful to you, at least food for thought! I wish you all the best on your health journey, and I hope you are able to find relief from your symptoms soon.

@cmmichaela, thank you once again for all the time you're taking to send this information. Trying to limit glutamate does indeed sound like a hard job. But it sounds like your efforts are paying off!

I am definitely going to need some professional help with this, as I am now being advised to eat a ton of protein (more than the usual recommended amount) because I have severe osteoporosis and some muscle loss because my exercise has been limited due to the stenosis nerve pain. So am being told to build muscle (eat protein, and animal protein at that). There's got to be a compromise somewhere between the two types of diet, and I'll need to get help to find it. Meantime, thanks again, you're a great source of information and very generous to share it all. 🙂

Here is a link to a tool that can help you find the rough amounts of glutamate (also glutamic acid and glutamine) in foods. (The body typically can convert glutamate into these substances when it does not need glutamate to function at that moment and transfer it back into glutamine etc when it does not-- but in my case somehow this "shut off switch" is not working properly). I am severely simplifying this process and I am not an expert in this! This is very complicated stuff.

I have printed out a list for each food group and studied it so that I can gauge my glutamate intake a little better. You'll notice that the meats and cheeses and fermented veggies are at the highest levels. If you need to remain on a high protein diet, perhaps there is a way to choose high protein foods with lower levels of glutamate? Also, maybe take a look at how often you consume foods that are cooked for long periods, especially tomato sauces and slow cooked meats? Fermented veggies? Broths? Just thoughts and certainly something to ask a professional about!!

Here is the tool:
https://tools.myfooddata.com/nutrient-ranking-tool/glutamic-acid/fish/highest
I too had been keeping on a high protein food diet because I did not want muscle wasting when I could not walk well (but it is hard not to have muscle wasting when you cannot move as you like). I was not choosing lower glutamate proteins and I think that was the biggest part of my problem. So, I continue to explore and expand my diet as much as I can. I hope this chart/tool helps. Maybe bring printouts to a dietician? I wish you all the best!