Pain in feet and legs - Sjogren's or other?

[MAT51]

I call this pain my pain boots because it goes right up both legs. The worst of it is on the inner sides of my ankle bones but top sides of feet, shins and knees all tingle and are horribly painful with this turning to stone kind of pain. I see the rheumatologist next week and so am trying not to take any pain meds that might compromise my bloods. I don't know whether I have scleroderma or RA with my Sjogren's and I don't know how to describe this horrible pain. Does it sound neuropathic, arthritic or vascular and which disease process might be causing this kind of pain I wonder? I'm having horrific sweats and very tired all the time but also lots of visitors, walking, trying to cope with disequilibrium etc etc. Advice about how to describe this pain - is is tendinitis or neuropathy I just don't know?

[anita]

Can you describe the pain better?  Does it burn, ache, have shooting pain, etc etc?  Is it dull or sharp...does this change with activity?  Is it electrical in a way (many neuro type pain is like this)?   Does it hurt to touch the leg or push on it?  Does activity make it worse?  What makes it better (rest, elevation, ice, heat, etc etc)??  These are the types of question the rheumy will ask you in regards to the pain.

Neuropathy pain has electrical, shooting, and/or burning type pain

Arthritis is more achy pain...dull for most part (when resting), but can get sharp at times.

Vascular pain would hurt when you touch the area...as you would be putting pressure on the vessels involved.

Not sure how much this helps.

Try to think of the questions above, as rheumy will ask the same to help identify pain source.

[trc1962]

I always think of disequilibrium as a form of autonomic neuropathy, at least I think it is that way for me. I think your pain sounds neuropathic but I also get connective tissue pain with my neuropathic pain, so who knows. I know we all can agree that it hurts..a lot.

[MAT51]

Firstly thanks Anita for your very helpful pain description summary. I seem to find pain impossible to pinpoint often, let alone describe or quantify. For ages I assumed it was just how RA felt - although there was no swelling or touch tenderness or heat coming off the affected limbs. But as it worsened and the rheumy told me my RA was inactive I felt bemused? Then he mentioned small fibre neuropathy and I leant more. But then my old GP said he thought it was Raynaud's and put me on Nifedipine to see if it helped.

A connective tissue disease professor agreed that it was most probably the result of a vasospastic response. But after having to stop methotrexate and nifedipine I pestered to be referred to a neuro and the rest is my recent rollercoaster ride history!

It is burning hot cold and is definitely worse when I'm resting. But lately the severity of the burning is not nearly as bad in my legs as it is in my hands. The feet feel somewhat numb although I felt a wasp sting on my toe pad the other day so not entirely numb!

The pain in my ankles, shins and knees is vice like when I'm still for any length of time. I don't think burning or aching fully describe it although it is both. The tops of both feet are very sensitive to touch but nowhere else on my body is. The only way I can describe the pain in my ankles is funny-bone like? But it's constant unlike the pain when you knock your funny bone. I do get shooting pain still - mainly in my knuckles and fingers - but not frequently as I used to. Similarly to the burning soles it has died away mostly.

The other problem I seem to have is a very strange pain threshold. I was always reprimanded by my late mum, if I exhibited signs of pain so I've learnt to contain it where possible. But I don't seem to be nearly as affected by pain as many of my friends.  Sometimes, with acute pain I can't contain it but I definitely mislead doctors without intending to because of my lack of response. I don't know whether this is because I suffer from pain less or whether it is because I've always had pain in my life so have adjusted accordingly.

My other description of how this pain feels would include wet stinging nettle rash or sun burn with toothache - from top of feet to above my knees - bilateral like I'm wearing thigh
length wellyboots of pain. The rest of the sensory stuff in my hands and face is more like burning pins and needles at worst ie in middle of the night and mornings after resting. Otherwise just a constant crawling tingle. I think it's all neuropathic. The sweats are mainly last thing before bed and all through the night. I'm okay if I keep moving during the day but then the fatigue hits!

[MAT51]

I always think of disequilibrium as a form of autonomic neuropathy, at least I think it is that way for me. I think your pain sounds neuropathic but I also get connective tissue pain with my neuropathic pain, so who knows. I know we all can agree that it hurts..a lot.

Thanks so much for this - I'm sure my disequilibrium relates to the propriception issues that are caused by the death of small nerve fibres in my feet as the neuro stated. I only experience it when I'm standing up or walking - never when I'm seated. The neuro told me it is mild but I will never recover the sensation I've lost so I just need to get used to it. Since seeing her I've been trying to pull myself together by doing the walking exercises she suggested that I do at home. But I still get caught out on a regular basis - especially on uneven ground.

I have terrible sweats which I think are autonomic because my response to temperature changes is so skewed now. I'm also developing mild tinnitus that makes me really over reactive to noises so I had wondered about Menieres. I see the rheumy and endo next week and the neuro again on October so will hopefully get a more helpful analysis/ diagnosis and some proper treatment for it all soon. Yes it hurts - but how to describe the hurt to doctors is was I find hardest of all!

[anita]

The burning type pain is almost always nerve related...especially with the pins/needle.  Likewise, the sensitivity on the tops of your feet is also common with SFN.  All in all, I think you are mostly dealing with neuropathy pain.

Once you get things sorted out with diagnostics, then you can focus with the doctors on treating your pain.  But as you said, you don't want to muddle up any testing or Dx phase by introducing a new medication right now. 

[susanep]

My mother had the burning pain in her feet and legs. She almost never felt relief. She had peripheral neuropathy.

For the past couple of years I have that with my two toes on my left foot especially  on the toe pads that feel numb, but also if something scrapes across them I can feel it, so I would say more of a loss of sensation to what is normal.

susanep

[MAT51]

Thanks Anita and Susanep. I am sure most of my pain is neuropathic but I'm not sure if it's improving or progressing or remaining about the same. The reason I'm not sure is because of the loss of sensation and worsening disequillibrium. And sometimes I wonder if the pain might be joint or tendon pain that is suppressed by loss of sensation, so that it feels like this funny bone toothache rather than making itself apparent to me. Not sure if this makes any sense? The neuro told me to postpone my next consultation with her unless the neuropathy had progressed.. This was about four and a half months ago. I wish I could tell if it's worsening or improving but I can't. What she failed to grasp was that this stuff can creep up on us slowly and we simply acclimatise to it.

I wish mine only affected one area, or even just my extremities. When it flares it affects all of my legs and arms, my lips and gums and the left side of my face including my nose and left eye. Luckily for me the pain isn't constant anymore. But the disequilibrium is certainly getting worse.

[Maria3667]

Hi Mat,

My leg pain almost ceased to exist when I quit drinking coffee. I've quit the bean for a month now and to my surprise the pain has almost completely vanished (except after a day of excessive standing up or being very tired - but pain is nowhere near as severe).. I used to drink about 2 light cappuccino's on approx 4 days a week.

Hope this tidbit of information brings you closer to solving the puzzle.

Good luck,
Maria

[MAT51]

Thanks Maria. I haven't consumed caffeine for years!