Does anyone have neuropathy related to MGUS?

@circawdm

I think your MGUS type also may cause more issues. It seems IgM has different types of potential neuropathies that mostly relate to IgM being a heavier immunoglobulin than IgG and IgA.

I started really feeling this when my IgM got above 800.

I have vacillated, I was at 1400 last spring and now down to 900 but I don’t notice lesser neuropathy except with the cymbalta. PT did teach me some exercises that have helped.

@circawdm

I think your MGUS type also may cause more issues. It seems IgM has different types of potential neuropathies that mostly relate to IgM being a heavier immunoglobulin than IgG and IgA.

I started really feeling this when my IgM got above 800.

I have vacillated, I was at 1400 last spring and now down to 900 but I don’t notice lesser neuropathy except with the cymbalta. PT did teach me some exercises that have helped.

@tracypage sorry to hear about how your symptoms are so widespread 🥺. Although my biggest complaint is in the toes on my left foot, it seems so minor to the symptoms others are having on this forum. It amazes me how little toes can cause such pain that every step is agony. Thank goodness it’s only on the one foot (for now) so I just limp. Limping causes other issues too in knees and hips so I try to limit that the best I can

@positivethinking OK, here goes. This is NOT short.

NO sugar is part of the Mediterranean Diet/Low-Inflammation Diet. Sugar, red meat, fried foods/fast or processed foods, and alcohol are all HIGHLY inflammatory things. So, on the Mediterranean Diet (Google it), people are encouraged to cut out those things. It's not easy for some, but if you cannot do it, you will not reduce the inflammation in your body that's causing the nerves to be inflamed and irritated, which is causing your symptoms. If you have diabetes or an autoimmune disease, of course, those need to be under excellent control also.

I eat fish and chicken in moderation, plenty of vegetables, and most fruits, except those very high in sugar. I eat whole-grain breads, not white bread or other breads that are just expensive but still high in sugar. Keeping your weight **normal** is also very important. Caffeine is a big nerve irritant. So, again, if you want to do all you can to calm down nerve inflammation and irritated nerve symptoms, cut out caffeine. Drink no caffeine coffee and tea. Or drink herbal teas.

It's a real lifestyle change, but if you want to do things that cut down the symptoms and help build healthy nerves and prevent what nerves you have left from being killed off, you need to do these things -- for life.

Supplements that are vitamins and spices, mostly, that are anti-oxidant and anti-inflammatory, are D3, Alpha Lipoic Acid, Omega-3 Fish Oil caplets, garlic, turmeric, ginger, PEA, C, and E. See below for why they work. If you are on a blood thinner or have other serious medical issues, ask your doctor first, but most of these are very safe if you do not mega-dose. **Articles you can find show the safe maximum dose for these. Start slow, then increase dosage if they agree with you.

**Key Supplements & Their Benefits:**

Omega-3 Fatty Acids (Fish Oil): Potent anti-inflammatory, reducing cytokines and vascular inflammation; essential for heart health.

Curcumin (Turmeric): Blocks inflammatory pathways, comparable to NSAIDs for pain relief in arthritis, but safer long-term.

Ginger: Inhibits inflammation-causing chemicals and enzymes, shows promise in RA and musculoskeletal pain.

Green Tea Extract: Rich in polyphenols (EGCG) that fight inflammation and oxidative stress.

Vitamin D3: Modulates immune response, is crucial for immunity, and reduces pro-inflammatory cells.

Quercetin: Reduces inflammatory cytokines and improves RA symptoms and inflammatory markers.

Bromelain: An enzyme from pineapple with anti-inflammatory effects.

Garlic: Supports immune health and helps fight inflammation.

Spirulina: A blue-green algae with anti-inflammatory properties.

And those I listed above, like Alpha Lipoic Acid, PEA, etc. I can get all of these on Amazon. If you can cook with 2-3 cloves of garlic a day, skip the supplement.

Extra Virgin Olive oil is one of the very BEST anti-inflammatories. 3-4 tablespoons a day in cooking and on salads gives you a good amount. People in the Mediterranean countries, like Greece, have VERY low heart problems or inflammatory diseases due to their diet!

Exercising daily for 20-30 minutes is very helpful. If you have peripheral neuropathy symptoms (burning, tingling, numbness, nerve pain) in your feet, which is very common, YouTube has physical therapists showing you the exercises that are best for your feet and legs. You need to get the circulation going there! It feeds the nerves. You can also get massage machines (Amazon also) specifically for peripheral neuropathy! I bought special shoes and wear a diabetic support insole for people with PN.

Realize that in medical school, most doctors are not taught how to deal with PN not due to diabetes or an autoimmune disease. So they give people with MGUS Gabapentin or Lyrica or something like that to mask the pain/symptoms, but it doesn't do *anything at all* to help the cause or to help build new healthy nerves and slow down progression! So some may say this is a bunch of BS, but it is not, if you read MEDICAL articles on treating peripheral neuropathy using a change of diet, exercise, supplements, etc.

That's it. You can help reduce symptoms so you can walk and sleep and have better balance, but you MUST take charge of what you eat, drink, and exercise, learn stress control if you are anxious or highly stressed, and do things at home to help as well. If you do, you will notice a difference in time. If any of the supplements cause stomach issues, lower the dose, and ALWAYS take them with or after a full meal!

That's it, and I know it is a lot, but I guarantee you it has worked for millions of people all over the world who want true relief. It just takes willpower and buying healthy things to eat at home. If you don't have junk food, candy or booze at home, you won't eat or drink them! 🙂

@tracypage As I said in my recent long reply, exercises alone will not do much if you do not change what you are eating and a few other things. It is a multimodal approach if you seriously want to address the symptoms, grow new nerves, and slow progression. Cymbalta is ONLY an antidepressant, and sometimes it helps MASK the pain of neuropathy, but that does NOTHING to get to the cause, and your nerves from continuing to be killed, and progression of the damage and eventual death of your nerves!

It's not much better than Lyrica or gabapentin, which any honest neurologist will tell you does not prevent more nerve damage or lower inflammation in the body!

@positivethinking

Oh my goodness, I hear you on the toes! Sometimes my socks will make me feel like my toes are broken. Other times I can’t stand the fabric on my skin. I have Raynaud’s so I wear socks all the time!

I am hoping yours stays limited! But I am here if you need to commiserate.

@circawdm I have! I follow the mediterrian diet too. My good cholesterol is very high thanks to all the olive oil…. but it hasn’t helped the neuropathy.

There are so many things that cause neuropathy. According to neurology, it would be chemo that would impact mine but they don’t think I am there yet. You must have been luckier in your cause if your diet helped you that much. Which makes sense, b12, folate, iron…. all of these can cause this and those are things you might be able to regulate through diet. They just didn’t cause mine.

Has anyone been diagnosed with MGUS (monoclonal gammopathy of undetermined significance) and developed neuropathy? My doctors feel my neuropathy is a result of the abnormal protein from MGUS in my blood. Excruciating pain in my foot and blasts of shocking nerve pain. My dr just started me on 2 weeks of high dose prednisone. I’m told if this doesn’t work there is some type of infusion that may help reverse it. Just curious about other experiences regarding this

@positivethinking Yes. I was first diagnosed with neuropathy, then MGUS and now Waldenstrom macroglobulinemia, say that three times. Whew.

@tracypage, I have a blood cancer, also, I did not mention. Not MGUS. I take chemo pills. The diet and other things I discussed still help some. Topical creams containing menthol and eucalyptus can help with falling asleep. I never need more than Tylenol and he cream before bed—Epsom Salts warm foot baths, vibrating and heating massagers for the feet, ditto. Red light slippers (Amazon) also work very well if done daily. There are *many* things to help with symptoms that also help fight what chemo or diseases did.

The bottom line is that they damaged or killed nerves, and some also hurt your circulation in the legs, feet, and toes. I also wear compression socks, helping with circulation. If you join one of the neuropathy groups on FB you will get all kinds of ideas from others who have neuropathy! I moderate two of them. Members are in the thousands. Many people have idiopathic PN or neuropathy by known causes.