Daily - Morning intense pain in walking requiring assistance for about an hour; difficulty using my hands; pain subsides enough to walk unaided for short distance and limited hand use. Constant fatigue. EM flares can be anytime of day in feet and hands (I usually have multiple a day). Painful neuropathy in hands and feet with swings in severity. Balance issues. Cognitive problems with short term memory and reading. Deep muscle pains in thighs. Severe pain in ankles, knees, and hips in standing or walking. Minor muscle jerks in hands (only for the last 6 weeks).
Occasional: Debilitating EM and neuopathic pain where I cannot leave the bed.
Current Medications: Lyrica; Tegretol;
Topical: Occasional use of Ethyl Chloride on EM flares.
Current Diagnoses: EM and Small Fiber Neuropathy and maybe an autoimmune disease (anti-acetylcholine ganglionic receptor autonomic antibody).
Doctors have rejected MS, cancer, Lyme's, and I cannot remember the others at this time.
Result: Lost my job and applying for disability hoping not to lose our house.
I have EM less severe than many on this site, so my thoughts and prayers are with you.
MADS started the discussion about other conditions with EM. My question is: What other conditions have others had that mirror similar characteristics of mine.
Thanks to everyone on this site, especially Mads, who has been so awesome and sweet to me.
I am sorry you are having to go through this. How long have you been having symptoms? I have very similar symptoms myself.
I had mild symptoms of EM in just my hands for about 10 years but only mildly painful and the doctors didn't know what was wrong so I just went on about my life. Then almost 5 years ago I suddenly got a blood clot in my right leg for no reason.About a month after that O started having Joint pains all over and gastrointestinal problems.Shortly after my hands and feet became freezing all of the time. I had to wear gloves even in the summer and while sleeping ( my Em wasn't bad yet)
Then the EM kicked in over most of my body and I currently swing between EM and Raynaud's / Pernio. Then I started getting numbness in hands arms not related to Raynaud's and What I call my trigger finger where it would just twitch on it's own
I kept hanging up on people! You know how you are about to say good bye and your finger is hovering over the end call button? Well when I did that my finger would twitch and Hang up on them mid sentence! This only lasted a couple of months then went away on it's own
In the mornings I too have difficulty using my hands and walking for a good hour sometimes two. My hands Felt as if they were broken when I tried to move them but only while sleeping for almost two years but currently it isn't happening. It would hurt to no end to move them but I would have to force them and slowly they would move again and after a few minutes of doing that they would get better. It seemed the harder and longer I slept the worse the pain and the longer it took to get them able to move again.
I have been diagnosed with EM and a nonspecific connective tissue disease because autoimmune test come back normal other than elevated SED rate. My rheumatologist believes however if it walks like a duck and talks like a duck it's a duck regardless of test results so I am being treated for that. It has helped all of my symptoms except for EM.
My neurology tests have always come back inconclusive but suspicions of small fiber neuropathy and or autonomic neuropathy.
I don't have any good answers for you as to why this is happening. I can only let you know you are not alone. If I get any real answers I will be sure to share them with you jut incase it may relate to your cause for all of this.
I share your "trigger finger" problem...my fingers will double type a letter when typing or typing in a phone number, etc...this stuff we have is really something.
As well as having EM I also have a form of Dysautonomia, in my case POTS - postural Orthostatic Tachycardia Syndrome. I have learned recently that a subset of people with POTS also have EM. If you want to read more about POTS, if only to eliminate possibility of having Pots, dinet.org has a good information section that you could look at without having to join the forum.
Balance issues - for a number of reasons - are usually the main symptom of POTS, that is why you may want to have a look.
So, too, is temperature dysregulation a symptom of POTS.
Blue, Thanks for the information. I have the dizziness associated with POTS and other symptoms but my blood pressure tests do not indicate a severe drop, so my doctors immediately say I do not have POTS and they may be correct. Blessings, Don
Gosh Don...so sorry to hear you are having such a difficult time with your EM and lost job .. Don't give up Don!!! May I say that I believe Diet and keep moving as best you can do whatever is easier for you through the pain is very important. Remember the old saying " If you don't move it...you will lose it" ? Some days I have to PUSH so HARD through my exercise and as much as it hurts to do so...for me pain is worse when I am inactive. And in moving I do feel better in spurts and in the long run. I believe diet is crucial. Avoiding foods that cause inflammation (sugars, processed foods) sticking to a Whole Foods diet...healthy cuts of meat, fresh vegetables and fruits...or frozen fruits and vegies will work...healthy oils for fat...making sure you eat on a schedule no skipping meals...drinking lots of water...A good diet is key to keeping your engine running : )) and hopefully PURrrring again one day ; ) As frustrated as I feel and confused about EM...and just today I also posted my confusion with regards to EM... I am trying to develop a mindset to take control of my pain and not let my pain control me as much as possible. Easier said than done some days...but maybe if we encourage one another to keep pushing through our pain it will be of comfort to know someone is fighting to feel better with you... If you have access to a pool ( in early morning or evenings when sun is not out) the water resistance is so much easier on the body and you won't get over heated and bring on flare ups...just a suggestion that I hope helps you : ) Hang in there Don....One thing I just thought of as I am writing to you...Some days I feel so bad that I can only seem to focus on everything that is going wrong with me...And for example I am experiencing hair thinning around my hairline...Just yesterday I looked at my red itchy scalp and thinning hair and said to myself...Thank you God for the hair that I still have : ) Some days I only seem to be able to focus on being sick and all the pain because I am hurting so bad...and yesterday I took a look at myself and saw the parts of me that are not sick and I was very thankful for that...does that make any sense?? I hope and pray that WE EM sufferers can find strength and peace where there is no pain... I pray you feel better Don...please don't give up...this is when you learn you are much stronger than you know...I love the saying "what doesn't kill you makes you stronger" So true...We EM' ers will Hang in there with You!!! : ))
After 12 years of dealing with all this stuff the best I can say is I'm all mixed up and confused by what is happening to me and why. I have been told by my specialist and other people with POTS, that you can have high blood pressure and still have POTS. I get high blood pressure. It's the increase in pulse rate upon standing that is indicative of POTS. As well as other symptoms. I don't know if it still holds true but 8 years ago I was told that POTS is a diagnosis by exclusion, mostly. Sometimes it feels like a garbage can diagnosis.
I hope you find your answers. My heart goes out to you. As it does to others dealing with these sorts of illnesses. Blessings to you too.
I have not had that long yet. My wife is the one that kept pressing me on to find out and not give up. The varied symptoms and other illnesses that coincide with EM is staggering. Thank you for your encouragement and those on this site. It has been very helpful and given me a place to go during the...the hard episodes, to talk to those experiencing similar trials.
Thanks again,
Don
blue said:
Hi Don,
After 12 years of dealing with all this stuff the best I can say is I'm all mixed up and confused by what is happening to me and why. I have been told by my specialist and other people with POTS, that you can have high blood pressure and still have POTS. I get high blood pressure. It's the increase in pulse rate upon standing that is indicative of POTS. As well as other symptoms. I don't know if it still holds true but 8 years ago I was told that POTS is a diagnosis by exclusion, mostly. Sometimes it feels like a garbage can diagnosis.
I hope you find your answers. My heart goes out to you. As it does to others dealing with these sorts of illnesses. Blessings to you too.
I agree to an extent with what Mim had to say about keeping moving. It is important to do as much as you can without causing too much pain. I understand a you put it you have intense pain which In my opinion you shouldn't try and push through that type of pain. Pain is there for a reason. It is telling you to stop what your doing. With EM it's not just pain but swelling too. The inflammation is damaging enough on your entire system to have it chronically. Even short lived inflammation can cause damage by pressing on the nerves if left to continue.
I myself get that intense pain and that doesn't even do it justice. I can't find a word to describe it! I do believe however you have to stay as active as you can. What I do is do things in small increments.5-10 minutes at a time for me. If I have mild pain I keep going. When it gets too bad which it always does if I continue I stop , rest , elevate and cool. After I am better I get up and do another 5 to 10 minutes .
As Mim pointed out swimming is a great option. You may not be able to swim laps or anything because intense exercise will still raise your body temp regardless of the cooling water but you can do as much as you can without severe pain and that should be more than you can normally do outside the water.
I just worry about you and don't want you thinking you must keep going regardless of pain. Different people have different levels of pain and different people can handle different levels of pain. It is always best to be aware so you don't harm yourself further. I would try discussing with your doctor about any exercise regimen before you begin. Particularly one that is familiar with the body's physiological response to EM.
Thank you Mim for the inspiration you give us and the wonderful suggestion of swimming and keeping moving the best you can.
Take care,
Alina Mim said:
Gosh Don...so sorry to hear you are having such a difficult time with your EM and lost job .. Don't give up Don!!! May I say that I believe Diet and keep moving as best you can do whatever is easier for you through the pain is very important. Remember the old saying " If you don't move it...you will lose it" ? Some days I have to PUSH so HARD through my exercise and as much as it hurts to do so...for me pain is worse when I am inactive. And in moving I do feel better in spurts and in the long run. I believe diet is crucial. Avoiding foods that cause inflammation (sugars, processed foods) sticking to a Whole Foods diet...healthy cuts of meat, fresh vegetables and fruits...or frozen fruits and vegies will work...healthy oils for fat...making sure you eat on a schedule no skipping meals...drinking lots of water...A good diet is key to keeping your engine running : )) and hopefully PURrrring again one day ; ) As frustrated as I feel and confused about EM...and just today I also posted my confusion with regards to EM... I am trying to develop a mindset to take control of my pain and not let my pain control me as much as possible. Easier said than done some days...but maybe if we encourage one another to keep pushing through our pain it will be of comfort to know someone is fighting to feel better with you... If you have access to a pool ( in early morning or evenings when sun is not out) the water resistance is so much easier on the body and you won't get over heated and bring on flare ups...just a suggestion that I hope helps you : ) Hang in there Don....One thing I just thought of as I am writing to you...Some days I feel so bad that I can only seem to focus on everything that is going wrong with me...And for example I am experiencing hair thinning around my hairline...Just yesterday I looked at my red itchy scalp and thinning hair and said to myself...Thank you God for the hair that I still have : ) Some days I only seem to be able to focus on being sick and all the pain because I am hurting so bad...and yesterday I took a look at myself and saw the parts of me that are not sick and I was very thankful for that...does that make any sense?? I hope and pray that WE EM sufferers can find strength and peace where there is no pain... I pray you feel better Don...please don't give up...this is when you learn you are much stronger than you know...I love the saying "what doesn't kill you makes you stronger" So true...We EM' ers will Hang in there with You!!! : ))
Alina and Mm, thanks for the encouragement toward exercise and movement. Right now, my problem is the opposite. I have a problem just resting. I overdo everything. I was the guy that fixed everything...our cars, plumbing, electrical, washers, etc... My wife is trying to get me to stop. I still do as much as I can but MUCH slower and I break more than I fix. I feel guilty resting or sitting, so I pull myself around and fall and mess things up but I am moving everyday. My doctor said that I am hindering any nerve improvement that might occur. I just don't know...Anyway, thanks again, Don
Alina Delp said:
Hello again Don.
I agree to an extent with what Mim had to say about keeping moving. It is important to do as much as you can without causing too much pain. I understand a you put it you have intense pain which In my opinion you shouldn't try and push through that type of pain. Pain is there for a reason. It is telling you to stop what your doing. With EM it's not just pain but swelling too. The inflammation is damaging enough on your entire system to have it chronically. Even short lived inflammation can cause damage by pressing on the nerves if left to continue.
I myself get that intense pain and that doesn't even do it justice. I can't find a word to describe it! I do believe however you have to stay as active as you can. What I do is do things in small increments.5-10 minutes at a time for me. If I have mild pain I keep going. When it gets too bad which it always does if I continue I stop , rest , elevate and cool. After I am better I get up and do another 5 to 10 minutes .
As Mim pointed out swimming is a great option. You may not be able to swim laps or anything because intense exercise will still raise your body temp regardless of the cooling water but you can do as much as you can without severe pain and that should be more than you can normally do outside the water.
I just worry about you and don't want you thinking you must keep going regardless of pain. Different people have different levels of pain and different people can handle different levels of pain. It is always best to be aware so you don't harm yourself further. I would try discussing with your doctor about any exercise regimen before you begin. Particularly one that is familiar with the body's physiological response to EM.
Thank you Mim for the inspiration you give us and the wonderful suggestion of swimming and keeping moving the best you can.
Take care,
Alina Mim said:
Gosh Don...so sorry to hear you are having such a difficult time with your EM and lost job .. Don't give up Don!!! May I say that I believe Diet and keep moving as best you can do whatever is easier for you through the pain is very important. Remember the old saying " If you don't move it...you will lose it" ? Some days I have to PUSH so HARD through my exercise and as much as it hurts to do so...for me pain is worse when I am inactive. And in moving I do feel better in spurts and in the long run. I believe diet is crucial. Avoiding foods that cause inflammation (sugars, processed foods) sticking to a Whole Foods diet...healthy cuts of meat, fresh vegetables and fruits...or frozen fruits and vegies will work...healthy oils for fat...making sure you eat on a schedule no skipping meals...drinking lots of water...A good diet is key to keeping your engine running : )) and hopefully PURrrring again one day ; ) As frustrated as I feel and confused about EM...and just today I also posted my confusion with regards to EM... I am trying to develop a mindset to take control of my pain and not let my pain control me as much as possible. Easier said than done some days...but maybe if we encourage one another to keep pushing through our pain it will be of comfort to know someone is fighting to feel better with you... If you have access to a pool ( in early morning or evenings when sun is not out) the water resistance is so much easier on the body and you won't get over heated and bring on flare ups...just a suggestion that I hope helps you : ) Hang in there Don....One thing I just thought of as I am writing to you...Some days I feel so bad that I can only seem to focus on everything that is going wrong with me...And for example I am experiencing hair thinning around my hairline...Just yesterday I looked at my red itchy scalp and thinning hair and said to myself...Thank you God for the hair that I still have : ) Some days I only seem to be able to focus on being sick and all the pain because I am hurting so bad...and yesterday I took a look at myself and saw the parts of me that are not sick and I was very thankful for that...does that make any sense?? I hope and pray that WE EM sufferers can find strength and peace where there is no pain... I pray you feel better Don...please don't give up...this is when you learn you are much stronger than you know...I love the saying "what doesn't kill you makes you stronger" So true...We EM' ers will Hang in there with You!!! : ))
Don't feel guilty Don. This isn't your choice. I have had to deal with the same guilt. I am no longer able to work. I can't take care of my home. I do as much as I can and some days are better than others but It is more often than not that The house isn't clean and dinner not made. My poor husband has to come home from work and do more work. I have come to terms with this and my husband truly understands.
When I mentioned movement before I was only encouraging not giving up in what you can do no matter how small that may be and feel good about what you do. I feel good about it if I can shower and do the dishes in the same day! Like you I do what I can in small increments 5min 10 min on a good day. It sounds as if you should actually slow down.
It's all about finding your balance. you know what you can do and what you can't. Sometimes it is something you can normally do and all of a sudden you can't. Those are the days it gets to me. When I can't even do the little I do it really gets to me. Most days I have just accepted the way it is because it has been a few years and this is the new normal for me if that makes any sense
Please try to not feel guilty and listen to your body and what it needs. I know easier said than done.
I am so glad Don. It is god to hear you are working on that balance. It is difficult to achieve that's for sure. It is so strange how most people just live their lives just doing what they do and never giving it a second thought. That is now such a foreign concept for me. I wish I knew how to insert a link here but if you look up THE SPOON THEORY. It says it all and way better than I can. It is written by someone with Lupus I think but the way of life crosses over to any chronic illness really. It is a great story to share with loved ones who want to understand how you are forced to live a bit better and much easier than trying to explain it yourself.