Struggling with cluster of symptoms

Posted by nrivers @nrivers, Jul 31, 2021

Hi everyone,

I haven't posted in a long time, but periodically review your posts and find the discussion helpful. Thank you for sharing your stories.

I recently discovered that many people seem to have chest/rib pain or heaviness, which is one of my symptoms. Just seeing that my situation is not unique is helpful, releasing me from some of the fear and anxiety around it.

I have been to Mayo, Rochester four times in the last year and have been scanned head to toe, for a variety of neurological symptoms. The tests have been somewhat inconclusive. Currently, I'm scheduled to return for the outpatient pain rehab clinic in October.

Meanwhile, I find myself so frustrated with the continual discomfort. Numbness, prickling, burning in my feet and legs. Dizziness when looking overhead and in transitions from sitting to standing and walking to standing still. Waking up at night with my hands falling asleep repeatedly. Feeling like my vision is blurry when driving a distance. Heart palpitations. There seem to be so many things wrong with me! Are they connected–or just random things?

I vacillate between thinking that it's just my age–67–and I have to learn to live with these distressing sensations for the rest of my life, or that I have some neurological disease Mayo has yet to diagnose (at this point, they say it's idiopathic SFN but want to test annually), or that it's a mind/body disorder that can be eased by "rewiring" my brain. At times, I just feel so hopeless about it all!

Does anyone out there have similar symptoms? Have you been able to sort through this and find ways to live with these symptoms? Or resolve them? Thank you for any input you may be able to give!

Interested in more discussions like this? Go to the Neuropathy group.

@nrivers I would ask your neurologist about thoracic outlet syndrome and Mayo can test for that at their vascular lab. The tightness in your chest, hands falling asleep at night and possibly the dizziness and heart palpitations could be from TOS. I have TOS and I am in physical therapy long term and doing myofascial release therapy. My arm used to go totally numb at night and my hands would turn blue and get cold.

Here are some links for information.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Does TOS seem like a possibility for you?

REPLY

Hi Jennifer, Thanks so much for sharing your story and these links. I can ask about TOS. I had never heard of this disorder before; there are certainly a wide variety of conditions that cause neurological symptoms! It is confusing, to say the least!

I'm not sure that I have this condition, as I don't experience any weakness in my hands or arms and they don't turn blue at night. I have noticed that in the last several years, my resting pulse rate has slowed from about 60 to 55 and my hands often seem very cold in the winter–it takes forever for them to warm up if I'm outside walking or skiing.

My neurologist did say that xrays revealed some narrowing of the cervical area of my spine and that this could be causing some of the dizziness. The other day, I was reading instructions above eye level at a store—which caused me to crane my neck. I felt so dizzy all of the sudden that I had to drop my head and pause for 20 seconds to keep from blacking out. At the same moment I felt numbness and tingling in my hands returning–so there is some correlation there.

I will ask about PT. I am glad that it is helping you! And maybe some form of PT or exercise could be helpful for me, too.

Again, thanks!

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@nriversYes, I have been living with a lot of same symptoms you are having. i am 69 yr old and have been living in this condition since I had surgery 22 yr ago to remove a foot long tumor from end of my spinal cord the tumor was attached to end of spinal cord and had grown and entangled to all of the syatic nerves. I went thru a 13 hr surgery woke up in the NICU on lots of pain meds, moved to a room next day. was out of it for approx 5 days when I started having breathing difficulties and my family went to nurse and she pulled lines to pain meds. Thats when I woke up enough to know what kind of pain I was in, it was the worse kind of pain you could imagine from my waist down to end of toes, stinging, burning, pins and needles and I wanted to die and get it over. PT came into room to get me up to walk and when they put me on my feet I started going down so I ended up falling backward into bed because I could not walk. After second attempt I was able to stand for a second with two PTS holding onto me., By the end of two weeks, I cold slowly walk with walker for 8 or 10 steps. At the end of two weeks I was transported to Rehab center after intense rehab I could walk approx 10 ft and turn around and walk back to my bed. Was at home in hospital bed for the next year.and going to outpatient PT 3 times week. As time went on I continued to improve and could walk by myself with a walker at approx 18 mo out but still had terrible balance problems and still in severe pain. I was sent to pain clinic and on high doses of Oxycontin plus Percocet after 5 yrs I decided I was not living on all the pain meds and begin to decrease little at a time until I was only taking Percocet , it took me approx 9 months to get off the Oxycontin which I was taking 80 mg every 6 hrs. Doing much better at this stag but still in lots of pain but was just thankful that I could set up and enjoy my coffee while looking out my dinning room window at the beautiful scenery of the Smoky Mountains. I continued to improve for next 4 or five years but 2 yr ago things started going crazy the pain, burning and stinging in feet and legs begin to get worse specially in late evenings and night, my RLS has gotten worse over the past 5 yr and now it is every night and now the feet and legs are 24/7 and the balance problems is much worse, not to mention that I have had 2 TKR in past 6 yr and cant stand up to long because my back feels like there is nothing there to hold me up. Now, I have started this weird jerking, its just only occasionally my head and shoulder will all of a sudden jerk or my arm will jerk, dont know what this is!!! Two yr ago my feet and legs begin to swell and after many test Dr said blood was not returning back to heart the way it should and the best thing I cold do is wear support stockings and keep feet elevated as much as possible. Lately I have had two large blisters on legs due to them swelling and you mentioned your hands, I am also having some problems with my hands, I had Corporal Tunnel surgery on right hand 2 yr ago but it swells gets stiff and hurts also pain in both shoulders and arms Sorry for the long post but wanted you to know that you are not alone and I am thinking of you and hope you can find some relief. Please let me know if you get any answers or results as to why these things are happing. May God watch over you and give you relief. Sue

REPLY

Thank you for sharing your issues.i am also 67 and 9 months ago started having some of your same symptoms. Tingling, prickling, burning in my toes and fingers. Itching as well. I am under the care of a neurologist who ordered a battery of tests for all possible diseases and nothing showed up.
I am not taking medication because my symptoms aren’t that bad. Like you I live wondering where this is going. But I understand that there are unexplained disturbances we can experience.
I decided to keep active, stop worrying as much as I used to, massage with cream -it does help me. Sometimes a shower helps.
Hope this is useful for you.

REPLY

I was wondering if you have had your vision checked. I am 65 by the way. I have seen the Neuro Ophthalmologist twice now. The first time that I saw him I was having pains in my eyes. He checked my vision and my corneas and said I had no damage. The second time I went to him I was still having the pains in my eyes. Some patients have dry eye. I know I didn't I read the symptoms. I finally got the answer I was looking for. My eye pains are related neurologically. He also said I blink my eyes more than other people. I will be getting my eyes checked yearly to see how the nerves in my eyes are doing. I also have had palpitations. I have had them in the past but not like this. I went back to my cardiologist and she had me do a two week heart monitor. I was totally shocked that the highest my heart rate was 183. I feel really stupid because I am a retired nurse and I didn't realize that my heart rate was up. I just felt different. I now know what a high heart rate feels like. That is one of the symptoms of SNF. However my Cardio is doing some tests to make sure it isn't something in my heart. I have SNF. I understand your fear and anxiety because I have it also. I still have one test pending and I still think mine is going to be idiopathic. I woke up two days after I retired and had full blown pin pricks and ant bite feelings all over and including pains in my eyes. I had weird pains in different places that I have never had before. On the back of my left hand I experience a feeling in the very same place many times over the course of the day. I have done a lot of reading about my medications and SNF. I am beginning to think that everything that I have had from two years ago to the starting might somehow be related. I have lots of questions without answers. I want to go to the Mayo in Jacksonville not for a second opinion but to see if I might get answers. I have read your story and lots of others and everyone seems to have a lot of the same symptoms. I am not sure if I will experience what symptoms you all are having. After reading and studying I am beginning to feel like I am waiting for the next thing to happen. I don't mean to sound down. I am glad to have this forum. It has helped me to understand some things. My other question is when my nerves are totally burnt out what will the next symptoms be? Those are the things I am not sure of.

REPLY
@zailey

@nriversYes, I have been living with a lot of same symptoms you are having. i am 69 yr old and have been living in this condition since I had surgery 22 yr ago to remove a foot long tumor from end of my spinal cord the tumor was attached to end of spinal cord and had grown and entangled to all of the syatic nerves. I went thru a 13 hr surgery woke up in the NICU on lots of pain meds, moved to a room next day. was out of it for approx 5 days when I started having breathing difficulties and my family went to nurse and she pulled lines to pain meds. Thats when I woke up enough to know what kind of pain I was in, it was the worse kind of pain you could imagine from my waist down to end of toes, stinging, burning, pins and needles and I wanted to die and get it over. PT came into room to get me up to walk and when they put me on my feet I started going down so I ended up falling backward into bed because I could not walk. After second attempt I was able to stand for a second with two PTS holding onto me., By the end of two weeks, I cold slowly walk with walker for 8 or 10 steps. At the end of two weeks I was transported to Rehab center after intense rehab I could walk approx 10 ft and turn around and walk back to my bed. Was at home in hospital bed for the next year.and going to outpatient PT 3 times week. As time went on I continued to improve and could walk by myself with a walker at approx 18 mo out but still had terrible balance problems and still in severe pain. I was sent to pain clinic and on high doses of Oxycontin plus Percocet after 5 yrs I decided I was not living on all the pain meds and begin to decrease little at a time until I was only taking Percocet , it took me approx 9 months to get off the Oxycontin which I was taking 80 mg every 6 hrs. Doing much better at this stag but still in lots of pain but was just thankful that I could set up and enjoy my coffee while looking out my dinning room window at the beautiful scenery of the Smoky Mountains. I continued to improve for next 4 or five years but 2 yr ago things started going crazy the pain, burning and stinging in feet and legs begin to get worse specially in late evenings and night, my RLS has gotten worse over the past 5 yr and now it is every night and now the feet and legs are 24/7 and the balance problems is much worse, not to mention that I have had 2 TKR in past 6 yr and cant stand up to long because my back feels like there is nothing there to hold me up. Now, I have started this weird jerking, its just only occasionally my head and shoulder will all of a sudden jerk or my arm will jerk, dont know what this is!!! Two yr ago my feet and legs begin to swell and after many test Dr said blood was not returning back to heart the way it should and the best thing I cold do is wear support stockings and keep feet elevated as much as possible. Lately I have had two large blisters on legs due to them swelling and you mentioned your hands, I am also having some problems with my hands, I had Corporal Tunnel surgery on right hand 2 yr ago but it swells gets stiff and hurts also pain in both shoulders and arms Sorry for the long post but wanted you to know that you are not alone and I am thinking of you and hope you can find some relief. Please let me know if you get any answers or results as to why these things are happing. May God watch over you and give you relief. Sue

Jump to this post

My goodness, Sue; you have been through an awful lot, and for a very long time. It is amazing that you have kept going forward all these years. I am so sorry to hear of the relentless pain these last several years–and the way it has affected your mobility. Are you still able to exercise in any way? How do you spend your time? Your faith seems to be a cornerstone for you–as it is for me. I find myself repeating the Serenity prayer a lot–not just the first part, but the entirety of it–accepting the world as it is, not as I would have it, surrendering to God's will, trusting all will be made right, living each moment, finding a path to reasonable happiness.

REPLY
@interest

Thank you for sharing your issues.i am also 67 and 9 months ago started having some of your same symptoms. Tingling, prickling, burning in my toes and fingers. Itching as well. I am under the care of a neurologist who ordered a battery of tests for all possible diseases and nothing showed up.
I am not taking medication because my symptoms aren’t that bad. Like you I live wondering where this is going. But I understand that there are unexplained disturbances we can experience.
I decided to keep active, stop worrying as much as I used to, massage with cream -it does help me. Sometimes a shower helps.
Hope this is useful for you.

Jump to this post

Thank you, @interest. I appreciate your comment..this sounds very similar to the onset of my symptoms. I, too, keep active–walk, bike, or ski, etc. I find that things are at least not worse if I do this, and my attitude is better for the most part. There are some very bad days, though, when I get discouraged and feel hopeless. I fear that my beloved wife also feels the weight of the burden. We both had lots of dreams for retirement–and, well, this was not one of them!

REPLY
@rnlorena

I was wondering if you have had your vision checked. I am 65 by the way. I have seen the Neuro Ophthalmologist twice now. The first time that I saw him I was having pains in my eyes. He checked my vision and my corneas and said I had no damage. The second time I went to him I was still having the pains in my eyes. Some patients have dry eye. I know I didn't I read the symptoms. I finally got the answer I was looking for. My eye pains are related neurologically. He also said I blink my eyes more than other people. I will be getting my eyes checked yearly to see how the nerves in my eyes are doing. I also have had palpitations. I have had them in the past but not like this. I went back to my cardiologist and she had me do a two week heart monitor. I was totally shocked that the highest my heart rate was 183. I feel really stupid because I am a retired nurse and I didn't realize that my heart rate was up. I just felt different. I now know what a high heart rate feels like. That is one of the symptoms of SNF. However my Cardio is doing some tests to make sure it isn't something in my heart. I have SNF. I understand your fear and anxiety because I have it also. I still have one test pending and I still think mine is going to be idiopathic. I woke up two days after I retired and had full blown pin pricks and ant bite feelings all over and including pains in my eyes. I had weird pains in different places that I have never had before. On the back of my left hand I experience a feeling in the very same place many times over the course of the day. I have done a lot of reading about my medications and SNF. I am beginning to think that everything that I have had from two years ago to the starting might somehow be related. I have lots of questions without answers. I want to go to the Mayo in Jacksonville not for a second opinion but to see if I might get answers. I have read your story and lots of others and everyone seems to have a lot of the same symptoms. I am not sure if I will experience what symptoms you all are having. After reading and studying I am beginning to feel like I am waiting for the next thing to happen. I don't mean to sound down. I am glad to have this forum. It has helped me to understand some things. My other question is when my nerves are totally burnt out what will the next symptoms be? Those are the things I am not sure of.

Jump to this post

Hi MLorena,

Interesting. I have also reached out to a neuro-ophthalmologist for an appointment, just yesterday, in fact. The visual symptoms are very strange and like you, I wonder if all of this is connected. Like you, I have not been diagnosed with any of the frightening neurological diseases they list as possible causes–yet, they cannot rule them out entirely either–and so one has to "sit" with the symptoms for several years, as they test occasionally to see if the protein levels are up or the light chain levels have changed, and so on. I didn't know anything about this until recently–I feel like I've become something of a lay expert on neurological disorders!

The neurologist I saw at Mayo Rochester recently moved to Mayo Jacksonville. His name is Dr. Lamb. A very kind, and extremely bright young man. You may want to see about an appointment with him.

I also have heart issues and have wondered what if any connection there is between that and the neurological concerns. I have mixed valvular heart disease which will eventually require a valve replacement. However, my cardiologist and neurologist think these two issues are unrelated.

Instead of a high heart rate, my pulse is low. I run 54-60 resting and my rate does not increase as much as it should when I get up quickly, start moving after stopping, etc. Hence: orthostatic hypotension. But they think its just another symptom of my autonomic nervous system being out of whack.

MLorena, I am sorry to hear of your pain and empathize with you in your struggle. You are not alone. Hang in there!

REPLY
@nrivers

Thank you, @interest. I appreciate your comment..this sounds very similar to the onset of my symptoms. I, too, keep active–walk, bike, or ski, etc. I find that things are at least not worse if I do this, and my attitude is better for the most part. There are some very bad days, though, when I get discouraged and feel hopeless. I fear that my beloved wife also feels the weight of the burden. We both had lots of dreams for retirement–and, well, this was not one of them!

Jump to this post

Nrivers , Stay strong.

REPLY
@nrivers

Hi MLorena,

Interesting. I have also reached out to a neuro-ophthalmologist for an appointment, just yesterday, in fact. The visual symptoms are very strange and like you, I wonder if all of this is connected. Like you, I have not been diagnosed with any of the frightening neurological diseases they list as possible causes–yet, they cannot rule them out entirely either–and so one has to "sit" with the symptoms for several years, as they test occasionally to see if the protein levels are up or the light chain levels have changed, and so on. I didn't know anything about this until recently–I feel like I've become something of a lay expert on neurological disorders!

The neurologist I saw at Mayo Rochester recently moved to Mayo Jacksonville. His name is Dr. Lamb. A very kind, and extremely bright young man. You may want to see about an appointment with him.

I also have heart issues and have wondered what if any connection there is between that and the neurological concerns. I have mixed valvular heart disease which will eventually require a valve replacement. However, my cardiologist and neurologist think these two issues are unrelated.

Instead of a high heart rate, my pulse is low. I run 54-60 resting and my rate does not increase as much as it should when I get up quickly, start moving after stopping, etc. Hence: orthostatic hypotension. But they think its just another symptom of my autonomic nervous system being out of whack.

MLorena, I am sorry to hear of your pain and empathize with you in your struggle. You are not alone. Hang in there!

Jump to this post

@nrivers I appreciate your comments very much! I know I am not alone. My mom always use to tell me that if you think you have it bad look in someone else's backyard. I know a lot of people out there are really having more issues than I am. I have had many different kind of journeys in my life and this is just a very different one. I think after reading about small idiopathic nerve fiber that it seems to me that there are symptoms but there is no way of knowing yet how this plays out. After reading I really do feel somehow everything is somehow connected. Another piece of the puzzle. I worked in a position where I had to do a lot of talking to patients and families. That was the best part of my job talking to the families and taking care of the patient. It was easy for me. I am working on me right now. Thank you also for recommending Dr. Lamb. I have worked around Doctors for many years and I have seen a lot of Doctors because I have moved around the country. I have met some non-caring Doctors and I have decided not to keep them. I have a cardiologist who is fantastic very caring and knowledgeable. So I think of her when looking for a new Doctor. nrivers You hang in there yourself!

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