Small Fiber Neuropathy

Posted , 9 users are following.

Hi all, Yesterday i was told i have SMN, Going to a expert clinic in Manchester in a few weeks to fully confirm it. 

But my nero doctor said its not progressive however everything ive been finding (most usa sadly) is saying it is. 

It started suddenly in my right hand about 7 years and then moved into my left then moved in both up to my elbow and has since then now gone into my right leg.

I lost my job because of it 7 years ago and have been on long term sick since then. 

So while i fully get there is not a lot of info around about this condition my questions are.

1 - is it progressive.

2 - do or can people work with this.

3 - how much of a normal life can people have.

Thanks

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  • Posted

    Hello,

    Sorry to hear you have SFN is it progressive iv'e had it over 2 years i would say yes since i had all the test done i found i can't feel heat anymore or my feet i can cut myself and no feel a thing my hands are bad feet toes legs 

    not working but my mother's died a month ago and now i  have to find a job.

    Normal life ? yes 

    what drugs are you on 

    ask for lidocaine patches i use them on my feet and they are really good also for my hands i wear splits from amazon they are hand supports .

     

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    • Posted

      Sorry for late reply. I take 600mg of Gabapentin 3 times a day. 60mg of duloxetine a day. 1000mg of naproxen and salpadol a day and 50mg of amitiriptyline at night. I’m also on 10mg of butrans. Just to note all the about still leaves me in pain out of 10 around 3 or 4.
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  • Posted

    Hi I woke up last Dec with tingling in both my feet within hours it spread to my knees and then into both hands I've had numerous bloods and an mri of my brain all clear neuro diagnosed me with idiopathic sfn mine has stayed consistent since Dec with not a second without tingling but no progression from where it is there is a small fibre neuropathy group on Facebook mostly Americans that all say near enuff that it is progressive I'm going bk to neuro on 27th as I had been signed off once diagnosed but have been asked to be seen again as not getting better I'm heavily pregnant which means I've been unable to take anything for this what is the clinic called in Manchester as I've found little is known about this illness

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    • Posted

      Forgot to say I have no loss of sensation can feel full hot or cold no loss of strength just constant tingling that is none stop
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    • Posted

      Hi Dawn sorry for late reply. I don’t know too much about tbh. But my neurologist told me about it as a last resort and even though I’m still under him I’m also going under this clinic at Manchester, he also said there I should one in London and that’s it. But he wants me to go to the Manchester one first to see a gentleman there and see what he says from there on in. Mine has progressed over the last 7 years but the frustration of it all is no one is giving answers and that’s what I want. I understand it might be rare but. When I get booked up with this place in Manchester I’ll let you know where it is. All I know so far is it’s somewhere in Manchester and my nero guy says the guy in charge at Manchester is one of the best in the uk. But as soon as I know I’ll let you know.
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  • Posted

    Hi,

    I was diagnosed with SFN seven years ago. Initially it felt like I had thick socks on. Or like I was walking on lumps. Then it felt like tight bandages round my feet. It spread to my lower legs but under the calves. I asked if it would like go up my legs and my consultant told me because it was only SFN it would be highly unlikely to fo above my calves. That was five yesrs ago and so far, touch wood, he was right. The one thing that HAS got much worse is the horrible tight feeling in my feet and lower legs. Also night cramps if I get into bed without first stretcking the muscles in that area, also I can't feel if my feet are gettinbg warm when i put them on a hot water bottle. So I have to be careful of heat. My feet alwas SEEM cold but aren't too cold when I actually feel my feet.

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  • Posted

    Hi Sarah. I’ve had sfn for about eight months and I’ve got the horrible tight feeling in my feet. Not many people mention the tight feeling but it drives me mad and makes me get upset. I’m terrified the whole thing’s going to progress so I’m really pleased to hear yours hasn’t. It gives me a shred of hope. Are you in the UK?
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    • Posted

      Hi Darcey,

      Sorry to read you also have SFN. The tight feeling is the worst of all for me but my balance has got progressively worse. I’m not sure if it’s to do with the neuropathy but I can’t close my eyes and stay upright. The tight feeling started in my feet in 2006 and now I get the tightness up to the top of my calves. It’s been at that level for quite a long time now and I don’t feel it will spread anymore. Yes it IS scary, it’s not just a feeling of tightness it’s more like they’re set in cement and the cement has dried. I hate that feeling too. 

      Yes I live in UK, in East Anglia. You?

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  • Posted

    Hi all, I promised a reply when i had information.

    I can fully confirm the specialist unit is at Manchester Salford Royal Hospital. Ive been once to see these people and for the first time ever in 7 years they have narrowed it down to one of 2 things thats causing my issues.

    When i went the other week i sat for a hour with a specialist talked about everything that had happened from the start to now. They run some tests while i was there and i thought they are gonna tell me to come back but no they fast tracked the results. I was then giving the results and what these mean and the next steps or my plan. 

    In place ive got a scan coming up to look deeper and some other things. However i cant praise them enough. 7 years ive been pushed from place to place and these people are sorting it as best they can.

    This place at Manchester deal in SFN and Nero issues. its a full dedicated department. This is a life line for me. I would advise anyone who needs extra help to go the the GP and tell them you want to go here. 

    They not only have doctors but offer counselling, classes on how to cope with the issues, All sorts and its funded by the NHS. 

    Im back next week for scans etc so will update then but amazing it really was.  

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    • Posted

      Hi stu thanks so much for the update I too asked for a referel to Salford from recommendations on the Internet I'm wanting to see a Dr gosal is that who you saw as he's well known for dealing with small fibre I'm really hoping he can help me this has now spread since I had my baby up to my shoulders and upper legs for 14 months it stayed at my wrists and knees it's driving me insane I still think this is a glucose issue or some issue with food as it get's worse upon eating keep us updated won't u and I'll let u know how I get on there too thanks dawn

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    • Posted

      Hi Dawn - Yes i do. Really easy to talk to and never felt rushed or anything and they took the time to listen about whats going on but not only about that also about how it affects me.

      I had tests done while there and they fast tracked them over so i got the results while i was there. 

      When i was there i was with them for about 3 hours. They with me made informed choices of the plan of action they even wright to me every 4 - 5 weeks to see how im doing and to keep me in the loop. 

      I found it a great well run unit and could not thank them enough. Im going back sometime soon as i need a biopsy on my lip and leg to rule out something. But yep Dawn you should be fine and i would say to anyone get sent by ya GP as its a lifeline for most people. I would be interested in following your trip Dawn so if thats ok keep me in the loop somehow. Good luck dawn smile  

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  • Posted

    Hi there. Sorry about your condition. What is SMN?  I was dx with small fiber neuropathy in 2012. sad    It has been 6 long years of pain and suffering. I also lost a job and a boyfriend of 6 years. The anxiety and fear of trying to understand what was happening to me was over bearing (still is). My symptoms started with pins and needles in my calves and burning under my feet. It came out of the blue. I had a zillion blood tests, EMT/NCS, MRI's, Spinal Tap, to try and find a cause. The doctors ,8 Neurologist including two in NYC,USA, are saying it is Idiopathic SFN. It was confirmed with a skin biopsy test. So far I had 4 skin biopsies, 2 were "slightly" abnormal and two were "normal". My symptoms have progressed to P&N in both legs and arms, Burning feet with burning patches all over, Stabbing, poking, lancing, jabbing, bee-like stinging in feet and toes. Crushing bone pain and tightening pain in both legs!

    It has affected my quality of life. 

    Most doctors here in the USA say it is progressive. (ugh)

    Personally I can not work with this amt of pain. (I get Disability)

    I  tried all of the "first-line" treatments, Neurotin, Cymbalta, Amitriptyline, etc. I had to stop due to SE's or they didn't help. I even tied medical marijuana (Cannabis oil), it didn't help much for this type of pain. 

    I am taking Lyrica for the past 4 yrs, it does not help as much as it could. I take Tramadol as needed. I avoid taking it everyday for fear of becoming dependent on it. It doesn't help that much anyway.

    The doctors including Pain Management are becoming frustrated and dont know what else to do for me.

    Opioids do not help with this type of pain. Plus I do not want to become addicted to any opioids.  

    I am at my wits end with this "condition". I get depressed because I am otherwise healthy! 

    I hope I answered some of your questions. I hope you have something positive to tell me..

    Thanks, Take care! 

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  • Posted

    Hello Stubpd

    I have just joined the site and saw your interesting write up on SFN I have been diagnosed with this terrible disease

    But not getting any help from my Doctor she just looks at me as if its all in my head as I am unable to take the meds she offers me.

    I am getting more and more unexplained   Symptoms In my head face and now my nose and feel as if I need to see someone who will listen to me

    Please can you tell me did you have to go privately or via your Doctor. Not sure mine will refer me

    And as it is a few months since you posted I was wondering if the Hospital have helped you.

    Thank you Dee

    I am very interested in going to The Manchester hospital

     

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    • Posted

      Hi Dee I am not diagnosed with this through tests Drs have said I have it as all my tests for everything else are clear I woke up Dec 2016 with tingling feet that went up to my knees then into both hands it's stayed there none stop since it's 20 months this month haven't had a second without it ,I also wanted to go to Manchester and my dr refered me to Salford general unfortunately after a month wait it came bk declined the hospital said they do not take patients out of area you have to be manchester I asked to see private and apparently he doesn't see private patients I'm at a loss I saw Neuro here a few weeks ago this is the fifth one he told me in 30 years he hasn't seen anyone like me with symptoms continues so I don't hold much hope of any help Drs don't seem to care ,I'm walking around with constant feeling of when your feet wake up from pins needles but it's all up my legs and in my hands it's driven me insane tried every vitamin tried pills from Drs does nothing to help my legs ache like they cud explode I'm 42 and don't understand how u wake up 1 day and never feel your legs and hands the same ever again

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    • Posted

      Hello Dawn

      I'm sorry to hear of your symptoms Its all  horrendous isn't it. feet .Hands. Arms now head and face I really cant bear it.

       Doctor I can tell has lost interest in me .As I cant tolerate the meds she gives me. Wish I could

      Iv seen 2  consultants over the years. They have nt done any of the tests Iv asked them for.Like (Punch Biopsy) he says its not necessary as my symptom's are the diagnoses.

      I was hoping to ask for a referral to see this Guy in Manchester but I'm also out of Manchester area.

      but would have paid private on Stubpb.s recommendation. There is the London Clinic that also has a clinic 

      I wonder if they take out of area patients.

      Thank you for your information.it has saved me going to my GP. to beg her to refare me.. and to have her negative attitude.

      Keep in touch.

       (

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    • Posted

      Hi What meds have Dr given you Mine says I have tried all she knows and I cant take them so nothing to offer( me would you believe.)

      They have all been pain killer.s and all over the  internet it says pain killers don't work on SFN.

      the only others she says is an antidepressant I'm at the stage ill take anything if I can tolerate them.

      I'm sure you are the same.

      Thanks

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    • Posted

      Hi Dee I've seen neurologist again since we last spoke he said I can be refered to any hospital I wish but consultant has to refer not a local gp,went through all my symptoms again said there's nothing much they can do for me also went on to say that he sees ppl like me every week but in 30 years being Neuro he's never seen anyone with continues symptoms I have this none stop so I don't have much hope of anyone helping me I'm currently taking cymbalta 30mg as a last resort Google it it does help with nerves it comes under the name duloxetine as well as cymbalta both are the same thing ,it doesn't take it away at all but I aren't crying as much it's mostly lifted my mood ,over the past week it seems to of got worse again it's always there nonstop but it had been copeable yesterday was particularly bad and I'd had enough rang my gps and asked them why I'm left this way I snapped I just don't understand how u can be left like this with no interest as to what is wrong it's ruined my life ,forgot to say Neuro gave me a neupro patch that treats Parkinson's disease and restless legs I don't have either so why did I put it on the side effects are crazy 20 months tomorrow of this nightmare

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    • Posted

      Hello Dawn

      .have you tried again then to get an appointment at Manchester.im in the north east, I thought you could go to any hospital but if it’s only  the consultant 

      that can refare then I don’t see how I would get that as he discharged me last December,with nothing else to give me than pregabalin,that do not help iv had the meds you have been given ,but they caused horrendous side effects.so can’t take them.I can’t stand to be any worse than I am.due to meds.

      Are any of your symptoms made worse in the hot or cold weather,

      doc said that’s a defininate signs it’s SFN, why is your doc saying Manchester can’t help you,

      have you tried cold packs on your body.,just read on Facebook turmeric 

      helps nerves worth a try,

      also restless leg syndrome is the same family as sfn you don’t have to have the restless legs to have the syndrome 

      as that’s what I was originally diagnosed with,

      have they suggested  an antidepressant ,

      might help take care let me know if you get an appointment at Manchester hospital ,

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    • Posted

      Hi Dee I would still ask your dr to refer you it's worth a try I always thought you have the right to see any hospital you wish for second opinion I will see the Neuro again in Oct here and will ask them to send me there it's dr gosal there who specializes in sfn Google him his reviews are great he always tried to get to the bottom of it ,there saying manchester won't help me as my Neuro view is that I've had tests all fine it's sfn so it's pain relief only as idiopathic that's all I hear I've tried turmeric, high dose b12 selenium iron everything it says can help I have tried nothing works , there's loads of blood tests I've read online that they never gave me mercury, excess b6 hormones there are a Lot of women in a menopause group I've seen that have tingling but mostly on and off not none stop and I have no menopause symptoms at all in fact I have an 8 month old baby I went through a full pregnancy with this none stop no Drs where interested even then, I've decided to stop the cymbalta I havent taken it for two days now I don't see the point I sometimes thought it was helping but then flared worse and I'd rather be drug free if the benefit isn't sum relief at least ,there's so little known about this illness there is a fb group small fibre neuropathy support I also have fb if you would like to keep on touch that way please pm if you would like my name to add

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    • Posted

      ,Hi Dawn

      I don’t think there is any meds that help this sfn i have had them all I think.

      all bloods normal brain scan normal but then again I have read sfn is outside the brain ,think I need a soft tissue scan, but that frightens me as scan even affected my nerves in my temples I feel as though my nerves are plugged in to a electric socket,

      i wonder if sub has got any help or new meds from Manchester.as he has nt posted again.I don’t know how you cope with a baby you are very brave!

      i know you have no choice but you need a pat on the back,

      i thought yours  might have gone after you had your baby ,

      as hormons are another complicated thing,

      have you thought about an antidepressant for a short time to see if they could help.

      Im just unlucky enough nothing works

      i think I may be past any thing that help,s.

      they way my doctors concerned, I’m so embarrassed to go,to see her. 

      .

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    • Posted

      Ive only tried cymbalta anti depressant wise as that's also quite a powerful one as well as one of the only things to help sfn or so they say it did lift my mood but the tingling continues I've been on it since May at 30 mg I know it's very hard to get off at higher doses and Drs want it higher so I'm going cold turkey off it there's no benefit so what's the point I don't want to be completely hooked on something that isn't doing much ,pregabalin did nothing at all but give me bad side effects and pain killers do nothing at all I've got the neupro patch at home haven't dare put it on yet ,we need a list of things we both have tried bloods we've had and tests diet allergies there has to be something missed in us both

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    • Posted

      Dawn don’t cold turkey of cymbalta reduce over time as it’s to strong to just not take it,I could nt take it but also did nt like the wright up it had on the internet.take care with some of these meds.

       

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