Long time sufferer of Raynauds and SSc, but new symptom...

[gindy]

Hi guys,

So I've suffered Raynauds all my life and developed Systemic Sclerosis in my mid 30s like a lot of women do with Raynauds (i'm now 42), and I thought I'd suffered every symptom possible from my combined diagnoses. But these last few days my top lip has become increasingly numb, so I turned to my trusty friend Google which told me it's a possible side effect of Raynauds.

I'm a person who'll try to figure out what's going on in my body before rushing to the doc, but tbh I'm a little worried on this one.

The look of my top lip has also changed with it looking a little red and puffy, my gf said it looks like a trout pout lol.

So the big question is does anyone here with either or both Raynauds and SSc had this symptom?

Any and all info greatly received guys.

Oh, and yay I'm really chuffed I've found this forum

Charlie.

[zenabb]

My lips are very thin now, but I have found that events in our case are cyclical, they come and go to return later.

[Mars72174]

Giddy,

I have been having tingling around the edge of my lips and even into my face. I wasn't sure what it was. I asked about this and the neurologist asked if I had been tested for Lyme. 😒 Waiting for the results. Why doesn't ANYONE know more about these damn diseases? And why do WE all know more than the doctors?!

[Irene55 in reply to Mars72174]

Several years ago I told my rheumatologist that I had done a lot of research online and discovered a lot about Scleroderma before he had diagnosed me and that I talked to others on this forum. He said it is good because some of the people on the forums know more than the doctors.

I had done all the research because my GP knew nothing and was just telling me to take painkillers and "see how it goes."

I think there needs to be a medical institution set up online so that people who have GPs who are not listening can tell their symptoms and get help from experts who can point them in the right direction for healthcare. It took me more than 2 years and only was referred to a rheumatologist because the surgeon doing my second carpal tunnel operation recognised symptoms that I was showing.

My rheumatologist was excellent and he also referred me to Professor Denton at the Royal Free in London.

There is a big problem with GPs not knowing anything about auto immune illnesses because these are the first doctors we go to. We cannot guess which specialist we might need and if the GP knows nothing we are stuck in limbo slowly becoming worse and in my case almost to the stage where we cannot walk at all.

There are doctors working for Scleroderma so maybe in the future it will be better.

[dorysdaughter in reply to Irene55]

I also sort of self diagnosed after months of vague symptoms then raynauds, weight loss etc. Suggested scleroderma to my gp and fortunately he listened to me. Just as well because I already had lung involvement as well as the obvious skin symptoms etc. The reason I consulted my gp was cold numb index finger which soon spread to others, secondary raynauds. Because of swift diagnosis treatment was started right away and although I still have all the problems that go with this illness things seem to be stable at the moment! Good wishes to all

[cleoshome]

My whole face would swell like balloon due to the SD crest syndrome. I too have Raynaud's since ,22, . My disease is now complicated by pulmonary hypertension. And my heart failed dud go the SD in 2012. The disease that just keeps giving . I wish you luck

[gindy]

Blimey guys, it's not good is it?

I suppose I'd best make an appt to see the doc again

I'm honestly fed up of being at the doctors, I just want to live normally, even if for a short while for a change!

One last question, I was put on pregabalin anyone think that could be the cause?

[LucyJean]

Hi there, if you have recently started taking pregabalin and you have started developing symptoms that are unusual for you then I would think it would be a likely cause. I had a look to see what the potential side effects were and they go on and on and on...one mentioned puffiness of the eyelids, lips and face.

I cannot see any specific reason related to Raynauds why you would get numbness and swelling in your upper lip. Also in scleroderma it is more likely for the lips to shrink and become thin rather than swell.

Do you have a Rheumatologist or Specialist nurse that you can have a chat to?

All my best

Lucy x

[gindy]

LucyJean I read online that lip numbness can be a side effect of Raynauds (google not sure on exact site now tho) but then also read it's possibly a pregabalin effect. I was swapped from gabapentin to pregabaliin and they're the same family of drug, which is why I wasn't expecting any new side effects I guess.

I've got a gp appointment booked in a fortnight, so if the symptom/side effect don't get any worse or change I'll probably wait until then tbh.

I'm not under a rheumatologist atm as I moved home and all my docs need to change due to area regs :S

I really should push to get a new specialist sorted out. I've been plodding along thinking to myself "meh they never do anything worthwhile anyway, so what's the point" I guess I'm just sick and tired of no new info on a quite debilitating illness, so have learned to just get on with life.

Thanks for all the replies guys, I'm really chuffed I've found this forum.

[Irene55 in reply to gindy]

When I told my rheumatologist I was moving he referred me to a new specialist in the new area. But maybe that was because I was only moving from Suffolk to Norfolk and he knew the doctor and had worked with him. My old specialist also taught in the university and medical school.

[Helen58]

I gave up on pregabaline/gabapentin as side effects were too much my mouth wouldn't work at all I was like a slack jawed drunk and I kept tripping up. I am now on morphine patches without any problems.

[gindy]

Helen58 i seem to be able to tolerate the gabapentin pretty well, this numb top lip is very disconcerting though. If it is in fact a side effect I may just ask to go back to gabapentin.

I'm also on oxycodone for the excruciating pain from both Raynauds and SSc but after being on that for a few years I'm becoming so immune to it that it was increased for a while. The whole point of the pregabalin is so that I can decrease the opioid meds and hopefully manage the pain with a mix of lower oxycodone and the pregabalin.

Honestly I do sometimes feel I'm at my wits end with these combined diseases. They are such a challenge and living a relatively normal life is becoming less and less possible as the years go by.

We really do need investment and research into Raynauds/SSc so that the huge anoint of ppl (mostly women) living a poor excuse for a life can get some relief. It's outrageous how little resource auto immune diseases get. 😒

Grrr, I guess I'm not having a positive morning.

[radcliffe]

I have a numb top lip with like pins and needles some Dr's said its raynauds some say it could be small fibre neuropathy, but my top lip has shrunk instead. Helen.

[Winter64]

I have Raynauds but I also have vasculitis and urticarias, so I get Angioedema which causes my lips, eyes, face and/or whole side of face to swell. From the other answers I'm not sure it's this but thought I'd throw it in 😊 x

[willybilly]

my top lip itches like crazy why? No one knows. No "itch nerve" there I was told. Is there an itch nerve?

[gindy in reply to willybilly]

willybilly lol I've no idea about the itch nerves, sorry.

[gindy]

Hey guys,

So, there's a possible more obvious reason for my upper lip numbness... I think I may just have yet another gum infection 😞

Although I've never experienced symptoms like this from any abscess before, there does seem to be a bit of swelling in my gum.

Auto immune diseases suck in so many ways, various infections being just one of them!

[willybilly]

My lips also peel

[marilynmcl]

I get an itch on the roof of my mouth which is impossible to scratch! Very annoying!