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Avatar universal

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Good morning, I have finally been diagnosed with small fibre neuropathy. It is extremely painful, taking lots of meds and incurable. Cause is still unknown. The reason I'm writing is has anyone else lost friends and family along their path of illlness. It seems nobody wants to hear anything bad and they have just blocked me out. Or they say nasty little comments which demean me in front of my husband and daughter. It seems I spend a lot of time upset over their actions and words. Need some help regarding how to handle these situations. I don't want to lose them but feel I have no choice. Let me know what you think. Sincerely SM PS This is my daughter.
9 Responses
434278 tn?1324706225
I think I might be confused.

I looked up small fiber neuropathy and didn't see the death sentence you described.  Am I looking at the wrong thing?  You don't have ALS do you????

Here is a web site>
http://www.smallfiberneuropathy.net/top-5-causes-of-small-fiber-neuropathy/


Symptoms
The key symptoms are insensitivity to heat and/or cold. There may be other neuropathic symptoms which are common to all polyneuropathies, such as tingling, numbness, muscle weakness, cramps, pain and other symptoms. People describe the pain as an "ice pick being poked into bone", "like an electric shock", "or walking on broken glass". In some cases, the pain causes a loss in the ability to feel when injury occurs, so one may be bleeding or have a skin injury without even knowing it.


Is this what you are dealing with?
Avatar universal
Hi Karajo,
Small Fiber neuropathy is not in itself a death sentence. Sometimes people go into brief periods of remission. What they don't know yet is  the underlying cause. I have ben tested for autoimmune, diabetes, HIV, amyloidosis, vitamin deficiencies, Lyme disease, syphilis. Don't know about ALS or MS. I am seeing a physiatrist in London who is trying to figure it out. Next tests are EMG and QST (nerve condution tests).
The pain is exactly as you describe. Currently taking Lyrica, Cymbalta, Zanaflex (for muscles), and Tylenol 3's w/ codeine. Pain is still there.
What I find hard is that because people can't see your pain they often assume you are not sick or are trying to scam somebody. This is the way my in-laws are starting to act. I don't know how to defend myself. I have had SFN for 15 months and relationships are getting harder. Any good advice?

Marie822
434278 tn?1324706225
I guess the only advice I might have is to let their comments roll off.

I was extrememly sick for a year and a half.  At times I looked well, but just felt like something was seriously wrong.  Then others I could hardly talk I was so weak.  pulse 35 and BP 60/40.  Skin color gray/ashey.  I was near death and no one knew what was going on.  We did know I had hydronephrosis (swollen kidney / obstructed ureter)  But the urologist didn't offer any help.  So I would go to drs. to see if they could help.  One time while I was telling a friend the (seemingly endless list of symptoms)  I told how one dr. stopped me in the middle and said he didn't have time for this.  My friend (?) said, he didn't blame the dr.  He wouldnt want to hear me go on about my symptms either.  When he found out I had lupus he was ashamed he said that.  But you know, whenever I'm around that person I am "fine".  In other words, I don't confide in that person anymore. I hate to condone brick walls, but when you are dealing with insensitve people that is what you have to do.  

The people that really know me, know I am not a whiner or a complainer.  

I cry out to Jesus a lot.  And realize they are only human and can't experience the road I am traveling.  God wants to be there for you.  He really does!  He wants to strengthen you.  

http://www.smallfiberneuropathy.net/top-5-causes-of-small-fiber-neuropathy/

Don't know if you checked this web site out, but they listed some things that might could be the cause.  I didn't mean ALS would cause that.  I just detected a "death sentence" in your voice and wondered if I misunderstood.  

Cymbalta is supposed to be really good for neuropathy.  

Praying for you my dear.  Don't let people get you down.  We have so much to live for. And you have a beautiful little girl that I know gives you much joy.  Think on the things you can be thankful for.  It's all about attitude.  Tell yourself that you and God are going to get through this!

FYI, I'm doing great now!  I rarely have a bad flare and never like the one I felt like I almost died.  God is good!
Avatar universal
Good morning,
I know you are right. i went to my Psychiatrist on Monday and he reassured me I wasn't overreacting and going crazy. I walked out of there and a huge weight has been lifted off my shoulders. I'm going to be more indepent and its sad that you or I can't seem to discuss the most serious thing in our lives with friends and family.
I love my daughter more than the world, she is my best friend and we struggle together. I feel now I can help relieve the burden we are under. If someone makes a rude comment I will call them on it right away. That way hopefully, it will gain back the respect I lost when I had to give up my job.
Too bad we get judged by our appearance and how much money we have. There are lots of days I can't even get out of my pajamas. But I am seeing a new specialit and he is giving me hope. I'm a little rusty on prayers but have been trying.
You  are such a generous peson and I appreciate you boost of good thoughts. I'm glad you are doing well and will pray for you. SM
Avatar universal
How are you doing? I admire your faith and believe that our faith sometimes is the only way to turn. I have bi-polar that has changed my life. I had two episodes and lost a really great job. But with the support and strength of my husband endouraging, we made it through to find a better job,  well until this happened. I had a job I loved and going to work everyday was a pleasure. I gave it up in JUly, but find now I don't miss it. the greiving is over.
Even now we still find moments of pure understanding and love. I tell you its not easy but now I'd like to understand better what my husband and daughter are experiencing. I have accepted my diagnosis( still a litttle numb) but I want to make life better for them.
Keep up the good work Karajo. You offer many shoulders.
Sonia
Avatar universal
I have not received a dx as of yet (possible lupus) - I go to the rehuematologist in June, but I can sympathize with how you are feeling.  I find myself "hiding" symptoms from my family because I don't want them to think that I am a hypochondriac.  I thank God that my dr. is taking this seriously and that I may finally be able to put a name to all of the crazy symptoms I have been having for years.

For information only - and because this is an extremely special issue for me and my family, last week I lost a good friend at the age of 46 to ALS and my sister-l-in-law is in the final stages of ALS also at the age of 54.  Her symptoms started with weakness in her hands and legs - dropping things, falling down, etc then it affected the bulbar region (voice/throat).  My friend started in his hands and arms and stayed there for quite a while until it eventually affected his legs and bulbar.  ALS disturbs the motor neurons where signals from the brain make the muscle move.  A distinct symptom of ALS is muscle fasciculations (jumping) and this is from the muscle sloughing off.  The disease affects only voluntary muscles (the diaphragm being one) and does not affect the mind,heart, intestines, etc.  My sister-in-law is now struggling to breathe - and this is what eventually will lead to her death.  Since December, she has had 3 bouts with pneumonia.  I really have no idea what is keeping her here except for her desire to get every ounce of life out of life!  She is a nurse (having had patients with ALS), she knows exactly what's going on and she even lets us know what meds she will and will not take.  This is a hideous disease in the fact that her mind has been crystal clear (she is a little foggy at times now due to the lack of oxygen to her brain) and trapped in a body that does not work.  But never once have we heard her utter the words, "Why me?"  If anybody out there needs info, suggestions or just a shoulder please let me know.  The motto my brother and I have is that life has given us a lot of lemons - but boy, will we be able to make a whole lot of LEMONADE!!!  Love and prayers to you...sherry4362
434278 tn?1324706225
Marie, thanks for the words of encouragement.  You are a blessing too.  I really like this forum because it gives us a chance to bounce all of these strange symtpom off each other and a chance to encourage one another.

Sherry, I didn't know you were surrounded by so many with such a horrible illness.  ALS is aweful.  God has you in such a stratigic place of ministry and comfort.  Praying for you as you minister to this incredible need that is before you.  Praying for your sister-in-law too.  That our most awesome God would heal her.  Jesus purchased her healing when He died on the cross. Isaiah 53.

The Lord bless and keep,
Kara
Avatar universal
Thanks Sherry for your reply. I will pray for you and your family. You offer great courage and strength which I admire. Stick to the doctors and don't be afraid to tell them what's wrong. Trust me you are not a hypochondriac, just these diseases can have so many symptoms it feels like you are always talking about some new problem. I have finally reached my husband and now talk to him. It took a long time but I think he is starting to understand. I have found that now he is there, I don't seem to talk aas much to others. Which beleive in the end is best.
Lots of prayers
Sonia
Avatar universal
Thank you all so much...it is a really trying time for us all.  Marie, my husband and I are in counseling due to a troubled marriage for various reasons...and I can see some hope in the fact that communications are better...been married 28 years.  I have learned that God works in mysterious ways and the relevations of how He has prepared us (my whole family) for today is astounding.  I did marry my best friend, although at times it doesn't feel like it, but we are working through this one step at a time.  I spent the night last night with my brother and sister-in-law...it wasn't very good.  She had lots of trouble breathing so there was lots of suctioning.  I sometimes wish that God would just call her home.  I guess He is just not ready for her yet.  With her being a nurse, when her breathing is that troubled, she is afraid that the meds we give her at night to help her relax and sleep will put her in respiratory arrest...so she is very afraid.  And it is a real distinct possibility. It's a "damned if you do and damned if you don't" situation.  Thank you both for your prayers...and I look for a brighter day for us all!
love and prayers,
sherry
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