News:

New to the boards? Start with "Welcome! What you need to know as a member of this community"

Main Menu

Update on multisystem issues and toothache in my knees?

Started by MAT51, February 25, 2017, 04:08:45 PM

Previous topic - Next topic

MAT51

I've spent the past week setting up our new home-to-be while simultaneously planning around a new small business we set up last year. So life is very complicated and it is hardly surprising that my Sjögren's is flaring away.

During the past week I've had four Sjögren's related appointments. The first was with my optometrist who is in charge of my eye care. He knows a great deal about autoimmune eye conditions because his wife suffers from MCTD so this is his special area of interest. He explained that I have three different types of eye dryness.

After this I went straight to the dental hospital for an appointment with the oral consultant who ordered my lip biopsy. I explained that I seem to have a stage of little tender red spots on the roof of my mouth and she agreed that this was probably due to an infection of the tiny salivary glands as my dentist had said. She wanted an update on my progress since rediagnosis and was surprised that the rheumatology registrar had told me that there were no more treatments he could offer me if Cellcept fails to help my SFN - because I'm seronegative. She said he must be getting in a muddle and that my lip biopsy was so very positive that she felt I should be treated one way or the other and seemed to feel that the seronegative label was irrelevant as I have a very positive ANA and high inflammatory markers. This confused me a bit I must say. She is one of the top oral medicine consultants in the country - very knowledgeable - and seems to know more about Sjögren's than the rheumies in my hospital. 

We discussed my bruxism and this crushing/ pressure sensation on my front teeth and nose. She examined me and confirmed that I have TMJ - probably from arthritis. She gave me a sheet of recommendations re eating and things to avoid eating (chewy foods) and excercises to do daily and told me this could well be the cause of my constant tinnitus. She asked me to stop using my bruxism guard because it's making me chomp and grit my teeth more. She said the dryness is responsible for the burning/ tingling lips and gums - not an amalgam allergy as I had wondered. She said I was opening my mouth/lips to just within the minimum of normal range so most probably excludes Scleroderma despite my bloods suggesting this second disease.

The next appointment was great. I saw a young, male gynaecology registrar who said that oestrogen capsules for six months appear to have seen off my atrophy and I'm now very healthy down below, especially considering that I have Sjögren's and also gave birth to three large babies once upon a time. No need to continue with oestrogen capsules unless I start to get uncomfortably dry again. He felt unsure why I seem to have lost sensation now and advised me to tell the neurologist and rjeumatolgist about this I wonder if this could be the Cellcept helping because it's such a big change from last time 8 months ago? But he was pleased and I was.chuffed to bits!

Lastly I saw the podiatrist - who said that the pain I'm experiencing in my feet and legs is my small nerve fibres and he feels this is his least favourite pain to hear patients describe because he can do nothing at all - but he tested my feet and there appears to be no loss of sensation in them as was previously observed. We agreed this is a bit of a mystery. What worries me is that I feel this pain very badly now - it's like toothache from my toes right up into my knees. I'm not sure he or my GP are right to blame this on my small fibre neuropathy because it feels more as if it's in my bones? What I do know is that I have quite severe arthritis in my lumbar region and hips - as confirmed by CT and x-rays. It is not a vascular issue as I was wondering about - this wouldn't come and go - it would be constant and the colour changes would be too. So he's quite convinced, as are all my healthcare team, that severe leg pain due to SFN with mild Raynauds.

So why do my instincts say that this pain is due to something else as well as SFN? Could it perhaps be referred pain from the arthritis in my lower spine and hips I wonder? I know there's no miracle cure of course but it would really help me to know what kind of gnawing rat I'm dealing with here? It's always much worse when I'm still - ether lying or sitting. I'm very stiff as well and arms still very tired as usual but so far this has been deemed to be functional because of normal nerve conduction studies.

Does anyone here know anything about enthesites and whether this is perhaps what I'm describing when I say it feels like toothache - especially in my right knee?

I don't know why nothing hurts me in the right places?!

Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

anita

Has anyone even considered trying one of the MANY pain meds for SFN...just to see if you can get some relief?  I know they don't treat the underlining cause, but relieving pain brings about better quality of life.  And your pain seems to have a huge impact on you and your life.

It would certainly be worth trying something.  I know you've tried and failed with some of the seizure meds and anti-depressants.  But there are others that are worth trying. 
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

MAT51

Thanks Anita. Yes my neurologist wanted me to try Pregabalin and the last rheumatologist suggested Nortriptyline. I've tried Amitriptyline (3years until palpitations and sicca became too severe), Gabapentin (hideous side effects immediately - lasted 3 weeks on it) and Duloxetine (Cymbalta) which made my mouth terribly dry and caused gastritis to worsen  and didn't do much for SFN. Worst of all was trying to get off it after 6 months - retching, psychosis and weakened my GI system and immune system so badly that I had pneumonia and two lots of sepsis within 4 months of getting off it finally.

This is why I'm too scared to try others - and only Pregabalin and Nortriptyline left anyway. I manage okay on max amounts of paracetamol, antihistamine and one Zopiclone 7.5mg a week. I would just so like confirmation of whether it's SFN or not though - I suppose if the source was musculoskeletal (i.e. arthritis or enthesites then I could live with it more easily but mechanically all seems okay? I struggle to stand for very long at all without this pain in feet, ankles, shins and knees just defeating me though. Sometimes I have had to just sit on the ground because the pain is too much. So it's not just at night times or while resting.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

irish

Nortriptyline is related to the amitriptyline but I have read that it doesn't have as many side effects and the heart side effects are much less. Might be worth a try at a low dosage. Irish

MAT51

Thanks Irish I will ask about this at my neuro appointment in April. Good to know that it is better tolerated re palpitations. I would be a bit worried about the increase in sicca because struggling with rasping threat from oral dryness and eyes are very dry too just now. But i did find Amitriptyline quite effective so worth a try I agree. Mx
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

anita

It doesn't sound as if your pain is 'managed okay', if you are finding yourself on the ground at any point in time.  There are many other options...topical (Lidocaine, capsaicin, biofreeze, etc), TENS machine, and there are others meds being used all the time.  Of course there is the last resort (which I had to choose after maxing out of other meds)...opioids and/or tramadol. 

Do you have the option of seeing a pain mgmt doctor?  This would be your best bet.  They know ALL the new meds being used for SFN.  There is even DNA testing for pain meds (I have had it done) to determine which meds are effective for ME...based upon my DNA, and which might cause increased side-effects for ME.   It even takes into consideration other meds you are taking and possible interactions.  It covers ALL meds used for pain relief...from simple Tylenol, to strongest opioid...and everything in between (ALL antidepressants---there are MANY used, ALL anticonvulsants---also has many options).   It certainly would be worth asking about (seeing a pain mgmt doctor).  Just a thought.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

MAT51

A lot of thoughts, and I'm very grateful. I suppose I choose to avoid the kind of drugs you mention because my intolerances to date have led to worse pain. Tramadol, for example, gives me stroke-like turns that led me straight back to hospital. The NHS is bulging at the seams just now and one of the reasons given for the huge over demand is said to be because of severe drug reactions. I've had anaphylaxis twice to DMARDS and Pancreatitis too plus a drug for RLS hospitalised me overnight with narcolepsy and severe chest pain.

Pain management clinics have a year long waiting list here in most areas. Mine would not be in my large local teaching hospital because I live across the bridge just on the other side in a different county (state) so people in my area are being sent to pain clinic 40 minutes drive away to another hospital where there is no system for sharing of info between the hospitals - so my rheumatologist and neurologist would not be able to access my notes on what was recommended by the pain clinic for me or discuss with colleagues running this clinic. So I haven't requested a referral from my GP for these reasons. I've tried morphine in hospital and it did nothing at all for the SFN. The thing that helped most was Naproxen but it drove my gastritis nuts, even with stomach protectors - which I also have tolerance issues with.  Same with all NSAIDs and opioids - codeine worsens my already terrible constipation. IV paracetamol was wonderful for me but obviously it was only available when in hospital so I just stick to the oral stuff - which barely takes the edge off when things are flaring, as they are now.

Out of interest - do you think this toothache/ bone pain in knees, shins, ankles and feet sounds like SFN as doctors say - or could it perhaps be Enthesitis? I know you have PsA so will probably experoence this a lot. I'm starting to wonder if all this pain can be SFN whether it feels so much deeper? It would be interesting to know your thoughts on this



Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

Dawnmist

I know the ringing bone-ache toothache pain very well, and yes, it is one of the possible range of SFN pains. I had experienced it for decades on-and-off (without knowing what it meant) until starting Lyrica 2 years ago, and now only experience it in the heels when I'm lying on my back with my feet resting on the bed, or I have walked/stood up too much for the day. I also call it the "I just got hit on the bone with a baseball bat" pain.

The issue with the SFN is that it is the temperature sensing and pain/damage sensing nerves that are being attacked and damaged. This damage causes them to misfire - and any sensation that they could normally send can be sent as a misfire. So while most of the documentation talks about "burning/tingling/numbness and sometimes electric shocks" (I think in part that is because those are usually what causes a patient to finally say to their doc "help! what is causing this?!", it leaves out the itching/stinging/slapped/crawling/bitten or stung by insects/abrasion/cuts/slashes/crushing/bruising/bone aching/bone broken/bone twisting & shattering/sanded-raw flesh/etc pains, nor does it cover the *huge* scope of what "burning" can actually be experienced as. The fact that your docs did actually recognise your bone-toothaches as SFN indicate that they at least have some experience of the range of garbage that the damaged nervous system can throw out.

If you reacted badly to Gabapentin, I'd be extremely wary about trying Lyrica too - they both work against the same receptors in the body, but their absorption by the body is different. I've been testing a change from Lyrica to Gabapentin over the last few weeks, and finding it giving me about a 10-15% improvement over what Lyrica was giving.

You haven't mentioned trying Tramadol? It is the main "pain" (i.e. not anti-epileptic/anti-whatever) medication known to work for SFN. I cannot function at all without the combination of Tramadol/Cymbalta/[Gabapentin or Lyrica] (pain without them is now worse than the worst migraines I've ever had, and dropping any of the combination out causes pain to rapidly set in again). With them, I can knock the pain levels down to ones I can usually concentrate through at work (provided I use a wheelchair to get there/back, and modify how I do things like making sure I always have fingernails to type on/don't hold a computer mouse/etc). Initially Tramadol on its own was enough to knock out the SFN pain, but the SFN has progressed to the extent that other medications became essential. Codeine didn't touch the SFN, nor did Norspan, and there are a lot of people who say Morphine didn't work too. Be aware that Tramadol also causes severe constipation - but I found that taking a sachet of Movicol daily keeps things at a proper consistency despite the Tramadol. I don't like having to take an extra med to deal with the side effects of the Tramadol - but I like writhing in pain unable to walk/sleep/sit still even less. Edit: Oops, yes you did - but that came in while I was typing my reply. The SFN has now progressed to the point where it affects toes-groin, fingertips to elbows, and the back from waist to neck/shoulders, making it essential that my clothing is extremely soft or (even with the medications) I can't wear clothes for a full work day and have to head home early.  :-[

Amitryptaline and Nortryptaline really are unsuitable for someone with Sjogren's - they're both very drying, and moisture is already a critical issue!

The other thing that has helped in the most critical areas (soles of feet/heels/palms/index finger/thumbtip/middle fingertip) are Lidocaine patches. You can use up to 3 in a day for 12hrs on/12hrs off, and cut them to size. There is a lot more medication in the patch than there is gel for the patch to stick - if you put them on a sheet of plastic (e.g. an overhead-projector sheet) overnight, you can reuse them for a few days. Using a cloth tape like "Mefix" to anchor the edges of the patches also helps, because they don't get pulled around as much so the gel stays sticky longer (don't use a paper tape - it isn't flexible so it wrecks the patches in the first day, and irritates you every time you move). I have found that I can get anywhere from 4 - 7 days out of a set (which is good, because a pack of 30 costs about AUD160.00 here).

I'm sorry you're having to deal with this. There are a few SFN groups on Facebook. If you're interested, send me a pm and I'll send you the links for them. They've been really good for talking with other people and finding what did and didn't work for them - but everyone is different and of course what works for one person won't necessarily work for another. There's also a couple of really good videos on youtube about SFN ("A name for the pain" is the best one I've found - that one is about a year old now).
Diagnosed Sjogrens + Fibro March 2015, SFN Confirmed March 2016, LFN (sensory) Confirmed Dec 2016, ANA 1:640 Sep 2016, SSA+/SSB+, wheat intolerant (not gluten intolerant - rye/barley are ok), Vit D, Omega3 (fish), Gabapentin, Tramadol, Celebrex, Lidocaine patches, Plaquenil, Duloxetine, Primolut

anita

Wow...just typed out a long reply only for the forum to dump it since another member posted at the same time. 

I agree that you may be experiencing enthesitis.  I have this with my PsA and yes, it feels just as you describe.  That being said, SFN can have some pretty strange pain, so you may have a bit of both going on there.

We have long waits for pain mgmt as well...and a ton of red tape with the addiction problems associated with pain mgmt clinics.

Have you considered the non-medication alternatives, like TENS machine or topicals I mentioned before?

I wonder if your doctors have access to the new DNA testing for everything from metobolism, to whether the med is compatible for you, side-effects/reactions ,etc.  The company that did my testing is Proove Biosceience www.proove.com  and 'products' on the top has a drop-down of all the available tests.  I know there are other companies that do the same type of testing and likely a different company in the UK, but it gives you an idea of what is available these days.

Keep in mind that you were not properly diagnosed when you tried some of those drugs, and had a lot of things going on (infections, on DMARDS, etc) so you are a bit more 'stable' (medication wise) now and might have a better experience with trial of new meds...especially if you have someone that knows more about your current conditions now.  You can also take the pain mgmt doctor notes to your neuro/rheumy yourself...since they don't communicate electronically within the same system.  This way they can be informed and part of your treatment plan.  We have the same sort of problems with doctor 'groups' not being within the same group as other doctors a patient sees.  Can't hurt to get on the list and if you need it down the road, it's available...cancel if you don't need it.  But talk to your current doctors about other options...there is NO reason for patients to be in such pain these days with as many options out there available.

Not exactly what I typed out the first time...but close enough, I guess.  It's never the same when you have to rewrite everything.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

MAT51

Ach I know the frustration all too well re highly thought out responses being lost in cyber space. Grrrr!

To both you and Dawnmist. Thanks for both of your incredibly helpful replies. When we are finally settled here in a month's time (got to return north to island home for my husband to serve out his contract for another month) I will definitely ask for help dealing with this pain. In mid April I'm seeing my Tutonic neurologist again followed by first consultation with my new rheumatologist on 25th. I'm to have a nailfold cappilliary test for Scleroderma - which I'm fairly certain I don't have now. I will definitely ask about possible PsA and enthesis as a priority. If I do have this then I'm fairly sure that Cellcept won't be doing very much for it. That said, the Cellcept is only a trial and I'm wondering if it may be doing more behind the scenes than I'm aware of so my focus is on trying to be allowed to keep taking it. They have told me that they will depend on my own account of whether or not it's working. Some things are improved, while others such as the pain are worsening -  so maybe it is a good drug for me and certainly perfectly tolerable.

If I'm very honest I suppose the reason I don't emphasise the pain to my doctors is for fear of being thought neurotic. I've had a few doctors tell me it's functional pain in the past and I don't really believe in functional pain or Fibromyalgia. I don't take meds anymore unless I know what process is underlying. I have such hang ups about being taken seriously and a deep mistrust of pharmaceuticals now. That said I'm taking about 14 pills a day just now - not including my syrup of Senna and Lactulose. My chronic constipation is far more of a problem to me than I'd risk trying Tramadol again for. Pills are so hard to swallow these days I have to have jugs of water to get the existing ones down the hatch! So don't want anything surplus or potentially mind altering. After a lifetime of severe eczema I'm very familiar with chronic pain so I'm mostly philosophical about it but it does get too
much when sleep and mobility are severely compromised.

For example, despite very normal nerve conduction studies my finger tips are constantly dry, itchy and numb, nails always peeling and brittle and sore at tips of nail bed. My arms are now so weak that I can't lift heavy things without dropping them. My wrists are pathetic and my elbows hurt and upper arms ache. My need to know and understand the cause is more overwhelming than my need to find a solution. I guess for me there is always the optimistic belief that, by finding out what process is behind the pain, stiffness or weakness I will believe in it enough to risk trying further interventions?

According to optometrist and oral consultant the dryness of Sjögren's is by far my biggest issue now so SFN may well account for all the tootchache pain in limbs and arm weakness. It just feels so deep within that it's hard to imagine tiny nerve fibres in the outer tissue could cause something that feels like it's in my roots/ bones and tendons? But if you say it can then I'll trust you to know best.   I have mentioned them to my new GP but she just points to rheumatology and neurology input for instruction on how to proceed. My skin is too dry and itchy to risk topical therapies just now I think but will see if I can get a referral to pain clinic today when phlebotomist is taking my monitoring bloods for Cellcept later. I carry all my notes along anyway - it just means the consultants/ specialists don't get a chance to do their homework or discuss as multidisciplinary team. But hey ho! Take care xx
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

Dawnmist

Quote from: MAT51 on February 28, 2017, 01:10:42 AM
It just feels so deep within that it's hard to imagine tiny nerve fibres in the outer tissue could cause something that feels like it's in my roots/ bones and tendons?

The small fibre nerves are all throughout the body - in muscles, along the blood vessels, throughout the autonomic system, etc. They control things like the shunting of blood flow to/past muscles, the motility of the gut, They make up something like 80-90% of the nerves in the body. Which then makes me more irritated with docs that blow damage to them off as unimportant "because it's only pain". I know that most specialists concentrate on the ones in the skin - especially as they can actually stain and *see* those, but anything affecting the small fibre nerves is going to affect more than solely the skin ones. There's been people tested who only experienced pain from SFN in the face...and when tested with a skin biopsy at the ankle (because that is the reference site that there is "normal" control data available to determine whether a sample is normal or abnormal) they still showed an abnormally low number of nerves in the ankle consistent with SFN nerve damage. Dr Anne Louise Oaklander speaks about that in the "A name for the pain" presentation on Youtube: https://youtu.be/guS6PATRh7E?t=1m17s - it is about an hour long, but well worth watching!

There's a study published last year (sciencedaily.com/releases/2016/04/160411112554.htm) that showed that while the pain for diabetics/pre-diabetics often starts in the feet and progresses upwards, tracking with additional skin biopsies over time (3 years after the initial biopsies were done) at 3 places along the leg showed that damage was occurring at the same rate along the entire leg instead of in the currently-accepted belief that the nerves at the furthest extremities were being damaged at a faster rate.

Tendon burn and some muscle fatigue can be inflammatory. If you have very high inflammatory markers too (as you said above), inflammation will also be adding to your pain issues. With easily-irritated guts, I'm not sure exactly what options would exist for trying to reduce inflammation for you. :(
Diagnosed Sjogrens + Fibro March 2015, SFN Confirmed March 2016, LFN (sensory) Confirmed Dec 2016, ANA 1:640 Sep 2016, SSA+/SSB+, wheat intolerant (not gluten intolerant - rye/barley are ok), Vit D, Omega3 (fish), Gabapentin, Tramadol, Celebrex, Lidocaine patches, Plaquenil, Duloxetine, Primolut

MAT51

Thanks very much for your highly knowledgeable and enlightening comments Dawnmist. I did actually have skin biopsies taken from my calves a few years ago by my GP at instruction of the neuro - and  sent off to a pathologist somewhere. My new neurologist said that calves would have been as good a place as any to take samples from - but the normal results from a different neuro in another hospital did not put her off believing that I have SFN and also possible gangliopathy. I asked for further skin biopsies to be run but she refused saying they didn't need to "keep cutting bits out of" me for her to diagnose SFN. She said it's very diffuse for me so getting the right area to biopsy made it not worth doing again in my case. This contradicts what you are saying though.

I tried to push her on this matter but she told me I was focussing too much on this (suggested I was being obsessive!) and had to take her word that I have SFN and she would monitor me regularly from my own account of symptoms, rather than any further clinical tests. My CFS showed paired o bands and my lip biopsy was 100% positive for Sjögren's so this was enough evidence for her to go by.

But she did not think either SFN or gangliopathy would explain the arm weakness. I'm not sure what gangliopathy is but I think it's autonomic dysfunction relating to Sjögren's? She asked me to try Pregabalin, while at the same time saying there was nothing more to be done for these neuro related symptoms and trying further immunesuppressants would not help in her view. I was hoping she would be proved wrong so asked my rheumatologist if I could try Cellcept. He agreed but said that the neuro was probably right to say there's no treatment, apart from Pregabalin/ Gabapebtin, unless it affects the large nerve fibres as well. They both feel that Sjögren's SFN most commonly stabilises and doesn't continue to progress or cause further damage. If course I'm hoping they are right and this theory was confirmed by a person I spoke to from the British Sjögren's Syndrome Association but I know Anita doesn't agree and US experts also disagree.

The rheum explained that my high inflammation levels are due to Sjögren's making the blood thicker rather than systemic inflammation. I'm not entirely convinced by this theory. When I was previously diagnosed with RA, my inflammation/ESR levels ranged from 70 down to 17 according to anti-inflammatories, DMARDS and steroids and how stiff and pained I felt. If my sed rate is still high purely because of thick blood then surely a) it would be a good thing to try and thin it out and b) it wouldn't fluctuate so much according to symptoms and anti-inflammatory meds? So far it hasn't come down much with Cellcept but I'm still hoping that it will.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

MAT51

Quote from: Dawnmist on February 28, 2017, 02:28:13 AM
Quote from: MAT51 on February 28, 2017, 01:10:42 AM
It just feels so deep within that it's hard to imagine tiny nerve fibres in the outer tissue could cause something that feels like it's in my roots/ bones and tendons?

The small fibre nerves are all throughout the body - in muscles, along the blood vessels, throughout the autonomic system, etc. They control things like the shunting of blood flow to/past muscles, the motility of the gut, They make up something like 80-90% of the nerves in the body. Which then makes me more irritated with docs that blow damage to them off as unimportant "because it's only pain". I know that most specialists concentrate on the ones in the skin - especially as they can actually stain and *see* those, but anything affecting the small fibre nerves is going to affect more than solely the skin ones. There's been people tested who only experienced pain from SFN in the face...and when tested with a skin biopsy at the ankle (because that is the reference site that there is "normal" control data available to determine whether a sample is normal or abnormal) they still showed an abnormally low number of nerves in the ankle consistent with SFN nerve damage. Dr Anne Louise Oaklander speaks about that in the "A name for the pain" presentation on Youtube: https://youtu.be/guS6PATRh7E?t=1m17s - it is about an hour long, but well worth watching!

There's a study published last year (sciencedaily.com/releases/2016/04/160411112554.htm) that showed that while the pain for diabetics/pre-diabetics often starts in the feet and progresses upwards, tracking with additional skin biopsies over time (3 years after the initial biopsies were done) at 3 places along the leg showed that damage was occurring at the same rate along the entire leg instead of in the currently-accepted belief that the nerves at the furthest extremities were being damaged at a faster rate.

Tendon burn and some muscle fatigue can be inflammatory. If you have very high inflammatory markers too (as you said above), inflammation will also be adding to your pain issues. With easily-irritated guts, I'm not sure exactly what options would exist for trying to reduce inflammation for you. :(

I forgot to say that I watched Dr Oaklander's talk last year and found it inspiring - wish she was my doctor! Also wanted to add that my finger tips have recently become hard, slightly scarred and pitted and completely numb at the very tips around and under the nail bed. Do you know if this corresponds with SFN damage? I'm to be tested for Scleroderma with a nailfold cappileroscopy at next rheumy appointment the end of April so have been wondering about this but I don't get the colour changes relating to Raynauds at all in my hands so guessing it's a manifestation of SFN?
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

Dawnmist

I don't know about fingertips becoming hard. The numbness can be SFN, the rest...I have not seen mentioned anywhere previously.

My own experience with SFN is that it has not stabilised for me, but I am only one person. What documentation I have seen on it is that untreated it is progressive, and that it will often progress to include the large fibre sensory nerves too (but will usually leave the movement nerves alone if they had not already been affected in the beginning). That matches my personal experience so far.

If you have had a positive SFN skin biopsy, the only reason I have seen to repeat it would be if they were trying to get confirmation of treatment effectiveness - which they can also get from symptoms to some extent. Or if you were part of a study trial looking at it, to again determine the degree of success/failure of what they were trialling.

As for focussing too much on SFN treatment...it is a condition that can cause severe and disabling pain, and that pain is extremely difficult to control, and will be life-long. In your case it is even worse because you have had such poor reactions to the medications that are commonly used to try to reduce that pain. When something has such a profound impact on your life, of course you are going to push to try to find some way to mitigate its effects and to try to at least slow it down! What sane person wouldn't? Would they have accused someone with MS who had been unable to tolerate the commonly used MS treatments as obsessing over what other options they had if they continued to push for treatment? Why do they treat one form of disabling nerve damage as important while dismissing another form of disabling nerve damage as irrelevant...just because the disability is due to pain rather than loss of movement? Sorry, but it is an attitude within the medical profession that really aggravates me. Too many people dismiss other people's pain as "exaggeration" when it is something that they have not experienced themselves.
Diagnosed Sjogrens + Fibro March 2015, SFN Confirmed March 2016, LFN (sensory) Confirmed Dec 2016, ANA 1:640 Sep 2016, SSA+/SSB+, wheat intolerant (not gluten intolerant - rye/barley are ok), Vit D, Omega3 (fish), Gabapentin, Tramadol, Celebrex, Lidocaine patches, Plaquenil, Duloxetine, Primolut

anita

I have yet to see anyone say their SFN has stabilized.  Just ask all the people on this forum with SFN and Sjogren's.  Mine certainly hasn't after a full 20 years.  You are right about your oral consultant knowing more about Sjogren's than your rheumy (and neuro)...lol

Personally, I think your fingertips are more scleroderma related...not SFN.  Numbness is typical of SFN, but not the hardness and brittle nail beds.  Why do you say you don't think you have that??...you actually have blood work consistent with Scleroderma, as well.  I think it's important to be evaluated for this with your labs and fingertips and toes.  I don't think your mouth opening just within normal limits should exclude you from this anyway...that is a bit extreme IMO.

Her skin biopsy was negative.  But I agree with you, Dawnmist, about repeating skin biopsies for treatment effectiveness.  This is one of the benefits of the skin biopsy, is that it can be repeated many times to determine if the treatment is effective or if the condition is progressing. 

I honestly chuckled at the neuro comment about 'cutting bits out of you', as the amount taken is very small...like less than 1/8 -1/4 inch diameter.  Not to mention that it not only can determine fiber density, but also the morphology (condition of the fibers)...which is very important in diagnosing inflammatory SFN.



52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran