[Liftyourhands7]

Hi everyone,
I just got out of the hospital after 3 days, I'm a little confused about some of my symptoms and if my idiopathic SFN could be causing them.I have been a little short of breath with some chest pain, after receiving a CT scan with contrast here are my findings: mild bronchial thickening pattern and mild atelectasis. The Doctors at the hospital were not to concerned with this finding, but I'm starting to become very concerned in light of my idiopathic SFN. I'm not trying to look for trouble but I'm starting to become a little fearful of this finding. I was hoping you all might be able to help me understand if these finding might or might not be related to my SFN. Thanks again as always! Jan

[kjb85]

Originally Posted by Liftyourhands7

Hi everyone,
I just got out of the hospital after 3 days, I'm a little confused about some of my symptoms and if my idiopathic SFN could be causing them.I have been a little short of breath with some chest pain, after receiving a CT scan with contrast here are my findings: mild bronchial thickening pattern and mild atelectasis. The Doctors at the hospital were not to concerned with this finding, but I'm starting to become very concerned in light of my idiopathic SFN. I'm not trying to look for trouble but I'm starting to become a little fearful of this finding. I was hoping you all might be able to help me understand if these finding might or might not be related to my SFN. Thanks again as always! Jan

Hi, I too have been diagnosed with idiopathic SFN and seem to have similar other symptoms. I know I have a high BP- which I didn't until recently. I get shortness of breath too and some chest pains. I was checked out b a cardiologist who said I have heart palpations which are nothing to worry about. He put me on a beta locker with has done nothing to help with the chest pain/discomfort or shortness of breath. I do also get dizzy/foggy also which has only come about in the last couple of moths. Do you have this symptom too?

I have had this SFN for two years but have only been recently diagnosed. If you have an tips for managing the pain I would really appreciate it!! I'm at a loss right now.

Good luck with everything your dealing with though, its tough when the Dr's don't listen.

[Liftyourhands7]

Kjb85,
Sorry that you are also having to live with this diagnosis. I take Gabapentin to manage my pain, it helps some but not really to much. I also have palpitations but they won't give me a beta blocker because I have low blood pressure. You do seem to have many symptoms that match mine. It's hard to know sometimes if some of the symptoms are related to the SFN or not. This lung thing that I'm experiencing right now is the problem I'm dealing with, I just don't have a clue to whether it's related to my SFN or not, it's so frustrating. I think every time a new symptom appears that's it's related to this whole mess but I don't know if that's necessarily true or not...but the people on this forum are very helpful in trying to help others figure things out which I am really grateful for. If you ever want to talk let me know, I'll give you my phone number, just let me know. Thanks, Jan

Luke 1:37 For nothing is impossible with God!

[heb1212]

Hi, Jan... I've seen your posts lately and have been meaning to respond. I think another post of yours mentioned the new onset of burning mouth? Today's post is curious to me. I developed a subacute body wide neuropathy (axonal swelling) about two years ago and the burning mouth started about three months after the initial presentation of problems. As I said in another post, it's extreme pain... my entire mouth, gums, palate and even down my throat. It almost feels that it's in my throat glands or lymph nodes or something, but all my blood work (including ANA's) are normal.

But, I also had two chest x-rays, one done six months into my illness and another a year later checking for the possibility of a paraneoplastic syndrome. The first x-ray was perfect; the second showed pleural thickening not seen on the previous x-ray. I am also getting heart flutters and vibrations/buzzing throughout my whole body. All this began about three months after being very ill with a virus called parvo virus b19... the adult presentation of what is typically called Fifths Disease in children. It's supposed to be a MILD viral illness, but in some adults (ME!) it can be very severe and present with unusual viral or post-viral conditions. I've thought it should be added to the Liza Spread sheets because I've done extensive research on it since my life turned upsidedown, and it definitely can cause neuropathy. I traveled to a specialist and he confirmed this, so it's from a reliable medical source. Three neurologists later, mind you. It's listed in the Quest/Latov peripheral neuropathy diagnostic paper, too. It has been linked to auto-immune conditions and can cause persistent joint pain for many years.

So sorry you suffer Jan. I don't think I'll ever get over this, emotionally or otherwise. Everyone looks at you and doesn't know your body is SCREAMING in pain from head to toe. The Gabapentin at a minimum takes the edge off, and the idea of starting on Cymbalta or switching to Lyrica is scary. Dealing with the side effect profile for them I think would just add to an already really difficult situation. I'm a Christian, too, and I like the phrase "In His Grip."
Rom 12:12: Be joyful in hope; patient in affliction; faithful in prayer.
Blessings for the day, Jan


Sorry that you are also having to live with this diagnosis. I take Gabapentin to manage my pain, it helps some but not really to much. I also have palpitations but they won't give me a beta blocker because I have low blood pressure. You do seem to have many symptoms that match mine. It's hard to know sometimes if some of the symptoms are related to the SFN or not. This lung thing that I'm experiencing right now is the problem I'm dealing with, I just don't have a clue to whether it's related to my SFN or not, it's so frustrating. I think every time a new symptom appears that's it's related to this whole mess but I don't know if that's necessarily true or not...but the people on this forum are very helpful in trying to help others figure things out which I am really grateful for. If you ever want to talk let me know, I'll give you my phone number, just let me know. Thanks, Jan

[heb1212]

And by the way... my doctor does feel that my pleural thickening is something related to the virus, so your doctor may be right about that. Really, if my illness has shown me something, it's that doctors sometimes just don't know. Have you had ANAs checked for rheumatological conditions that can cause both neuropathy and lung conditions?

Originally Posted by heb1212

Hi, Jan... I've seen your posts lately and have been meaning to respond. I think another post of yours mentioned the new onset of burning mouth? Today's post is curious to me. I developed a subacute body wide neuropathy (axonal swelling) about two years ago and the burning mouth started about three months after the initial presentation of problems. As I said in another post, it's extreme pain... my entire mouth, gums, palate and even down my throat. It almost feels that it's in my throat glands or lymph nodes or something, but all my blood work (including ANA's) are normal.

But, I also had two chest x-rays, one done six months into my illness and another a year later checking for the possibility of a paraneoplastic syndrome. The first x-ray was perfect; the second showed pleural thickening not seen on the previous x-ray. I am also getting heart flutters and vibrations/buzzing throughout my whole body. All this began about three months after being very ill with a virus called parvo virus b19... the adult presentation of what is typically called Fifths Disease in children. It's supposed to be a MILD viral illness, but in some adults (ME!) it can be very severe and present with unusual viral or post-viral conditions. I've thought it should be added to the Liza Spread sheets because I've done extensive research on it since my life turned upsidedown, and it definitely can cause neuropathy. I traveled to a specialist and he confirmed this, so it's from a reliable medical source. Three neurologists later, mind you. It's listed in the Quest/Latov peripheral neuropathy diagnostic paper, too. It has been linked to auto-immune conditions and can cause persistent joint pain for many years.

So sorry you suffer Jan. I don't think I'll ever get over this, emotionally or otherwise. Everyone looks at you and doesn't know your body is SCREAMING in pain from head to toe. The Gabapentin at a minimum takes the edge off, and the idea of starting on Cymbalta or switching to Lyrica is scary. Dealing with the side effect profile for them I think would just add to an already really difficult situation. I'm a Christian, too, and I like the phrase "In His Grip."
Rom 12:12: Be joyful in hope; patient in affliction; faithful in prayer.
Blessings for the day, Jan


Sorry that you are also having to live with this diagnosis. I take Gabapentin to manage my pain, it helps some but not really to much. I also have palpitations but they won't give me a beta blocker because I have low blood pressure. You do seem to have many symptoms that match mine. It's hard to know sometimes if some of the symptoms are related to the SFN or not. This lung thing that I'm experiencing right now is the problem I'm dealing with, I just don't have a clue to whether it's related to my SFN or not, it's so frustrating. I think every time a new symptom appears that's it's related to this whole mess but I don't know if that's necessarily true or not...but the people on this forum are very helpful in trying to help others figure things out which I am really grateful for. If you ever want to talk let me know, I'll give you my phone number, just let me know. Thanks, Jan

[Liftyourhands7]

Hi Cathy,
Thank you for your wonderful post it was an encouragement to me. To answer your question, yes I have been tested quite extensively for autoimmune diseases, I only had positive result for SCL70(scleraderma) however that was almost 4 years ago and I have been tested 3 more time for SCL70 and have had a negative result. My Rheumy told me he does not believe I have Scleraderma, so for the last few years I have been in search of what is going on with me...my symptoms started 2 years ago after a very bad cold, I also had a pertussis vaccine shortly after my cold virus, that's when everything started to happen, in a very short period of time I had numbness and burning that started in my feet then it progressed upward until my entire body was numb tingling and burning, I now suffer from not only that but palpitations (PVC's) and now this thing with my lungs don't know if all of this is related or not, very frustrating. After I left the hospital yesterday I started to fell a little panicked, questions go through my mind like what is my future going to be...I said to my husband just this morning ,I'm starting to think I may one day be very disabled, he told me to try not to worry about that and just take one day at at time, and really that was such good advice and comes from a very reliable source, the word of God! I will continue to trust God with my future even though my body is screaming in pain because I know the Lord will never give me more than I can handle, the only time I really become depressed and panicked is when I take my eyes off of him, so my solution is to bring everyday to him, put my issues in his hands and then get support from others who know what I am going through like yourself.
Cathy I am a women's retreat speaker and my friend Linda and I have a ministry called Faith Multipiled ministries, if you can take a moment to go to our website, it is Faithmultiplied.com, click on the audio video at the top of the page and you can hear some clips of me speaking at a retreat. I also am a singer and there is an audio clip of me singing as well. I also wanted to encourage you in this journey we are on... God is faithful He will get us through this.
I am seeing a internal medicine Doctor in a couple of weeks, my neurologist told me there was really nothing else he could do for me and that I needed someone like an internal medicine Doctor to investigate these symptoms and try to find the culprit. I hate the word idiopathic, something has got to be causing all of this! Please pray for me and I will do the same for you. I did look up that virus that you had and I think your conclusions are right, that probably is what caused your SFN. Anyway, please let's keep in touch, maybe we will find some treatment that works for us, I like you am on Gabapentin and they have wanted me to switch over to cymbalta or Lyrica but I am so nervous about medications I am afraid to change . One thing I did want to tell you is that I find chewing gum does help my BMS, have you tried that? Hope we can feel better soon. Blessings, Jan

[heb1212]

... I really can't believe it. I contracted the virus in 5/12 and had a flu shot 10/12 and bam! Within five days the neuropathy started in my feet and quickly moved all over my body. I was tested for a year for everything under the sun while being assured I couldn't still have active virus, and then found out about a year ago that I have evidence of the virus lingering even now through a DNA positive blood test. So, my theory at least is that between the virus and the flu shot in relative close proximity the perfect storm hit me. I smiled when you said you don't like the word "idiopathic." I've said the same thing many times. Honestly, there's no such thing as idiopathic... just undiscovered yet. I'm a person who has always thrived on control and until this experience managed many things well, so at least one of the things the Lord is teaching me through this is to surrender completely. It's so hard. I feel like you do about expanding or changing the medicine I'm taking and I think it frustrates my doctors, but I've seen that the Cymbalta and Lyrica "work" until they "stop working" and you have to titrate up, increasing side effects, and that you can actually experience withdrawal symptoms while maintaining your current dosage. Thank you so very much for the link to your ministry. I will definitely check it out. I am grateful to have found you and a few others here who can identify with this strange, scary and painful condition, although of course I'm sorry that any of us found our ways here.

Originally Posted by Liftyourhands7

Hi Cathy,
Thank you for your wonderful post it was an encouragement to me. To answer your question, yes I have been tested quite extensively for autoimmune diseases, I only had positive result for SCL70(scleraderma) however that was almost 4 years ago and I have been tested 3 more time for SCL70 and have had a negative result. My Rheumy told me he does not believe I have Scleraderma, so for the last few years I have been in search of what is going on with me...my symptoms started 2 years ago after a very bad cold, I also had a pertussis vaccine shortly after my cold virus, that's when everything started to happen, in a very short period of time I had numbness and burning that started in my feet then it progressed upward until my entire body was numb tingling and burning, I now suffer from not only that but palpitations (PVC's) and now this thing with my lungs don't know if all of this is related or not, very frustrating. After I left the hospital yesterday I started to fell a little panicked, questions go through my mind like what is my future going to be...I said to my husband just this morning ,I'm starting to think I may one day be very disabled, he told me to try not to worry about that and just take one day at at time, and really that was such good advice and comes from a very reliable source, the word of God! I will continue to trust God with my future even though my body is screaming in pain because I know the Lord will never give me more than I can handle, the only time I really become depressed and panicked is when I take my eyes off of him, so my solution is to bring everyday to him, put my issues in his hands and then get support from others who know what I am going through like yourself.
Cathy I am a women's retreat speaker and my friend Linda and I have a ministry called Faith Multipiled ministries, if you can take a moment to go to our website, it is Faithmultiplied.com, click on the audio video at the top of the page and you can hear some clips of me speaking at a retreat. I also am a singer and there is an audio clip of me singing as well. I also wanted to encourage you in this journey we are on... God is faithful He will get us through this.
I am seeing a internal medicine Doctor in a couple of weeks, my neurologist told me there was really nothing else he could do for me and that I needed someone like an internal medicine Doctor to investigate these symptoms and try to find the culprit. I hate the word idiopathic, something has got to be causing all of this! Please pray for me and I will do the same for you. I did look up that virus that you had and I think your conclusions are right, that probably is what caused your SFN. Anyway, please let's keep in touch, maybe we will find some treatment that works for us, I like you am on Gabapentin and they have wanted me to switch over to cymbalta or Lyrica but I am so nervous about medications I am afraid to change . One thing I did want to tell you is that I find chewing gum does help my BMS, have you tried that? Hope we can feel better soon. Blessings, Jan

[kjb85]

Hi jan, thanks for the reply. It would bedgood to talk to you or email. Where are you from? Im in london. Im sure everything is somehow related as before my sfn started I had no other health issues. I dont know about you but Dr's seem to have no idea how this effects your life.mI'm having a really bad week right now. I'm ment to go away Saturday and am having a bad flare up right now. I even have a wheelchair lined up so I can go out fir a bit. I just dont know how to ease thing pain off today. Nothing is working. Have you ever tried pregabalin? I have been told its really good and I'm just waiting to try it. Can I ask whst you do to relief the pain you get? Kelly x

[Liftyourhands7]

Hi Kelly,
I am from California, the only thing I use for pain is Gabapentin, I don't really like to take to much medication but I think I might have to increase my meds due to the severity of my SFN. Right now not only am I suffering the affects of SFN but I also have a terrible urinary tract infection and bronchitis. I blame my SFN for these problems as well, SFN is a terrible disease that causes so many problems! My email address is Liftyourhands7@att.net. Please email me anytime. I'm sorry you suffer this terrible thing. Hope to talk with you by email soon. Blessings, Jan

Luke 1:37 For nothing is impossible with God!