Tingling in Feet
Hi All,
My first time on here. I have had RA for 10 years, tried Methotrexate for several years and could not tolerate it. I am now on Leflunomide and coping well with this medication.
In the last few weeks I have noticed a tingling in my feet, I just thought it was because I was tired. (My feet have the most damage to them) But over the weekend the tingling started to move up my legs, I am exhausted and starting to be a bit more wobbly in my feet.
The GP couldn't see me so called 111, they referred me to a walk in center, who then referred me to A&E. A&E were baffled why I had been sent to them and assumed it was to check for blood clots, thankfully none.
I was advised to have bloods done and go back to my GP they suggesting I am deficient in B12 and folate. Needless to say those blood tests came back normal.
Sorry for being very long winded, my question here is does anyone have anything like this to point me in the right direction. I am seeing a GP today, but on a call with them they seemed baffled on what to do with me.
I have read about neuropathy and RA but I don't fully understand this to know if what I feel would suggest this.
Really grateful for any help or advise.
It’s really hard dealing with your body like that, especially when the symptoms keep changing and nobody seems to be giving you clear answers. I do think it’s good that you’re following up with your GP again, because even if it is something like neuropathy, it’s probably not something you want to just wait out. Sometimes RA itself, inflammation, or even certain medications can cause nerve related symptoms, so even if the bloodwork came back normal, that doesn’t mean what you’re feeling isn’t real. Hopefully your GP can help point you in the right direction, because it definitely sounds like something worth looking into further. I want to leave you with an article that one of our contributors has written about neuropathy and RA. It might be helpful to you: https://rheumatoidarthritis.net/living/fraying-nerves/. And if you're comfortable and open to it, we'd love to hear how your appointment goes today! Best wishes, Latoya (Team Member) Thank you for this I will give it a read I have been refered to Neurology but a 3-4 week wait. They did mention it could be my RA meds, but doubt that is the reason as I have been on my current medication just over a year now. I will certainly update the forum once we get to the bottom of it. Hi
. On top of the excellent information from Latoya, I want to note that neuropathy can also come from comorbid conditions (autoimmune conditions like RA love to collect others). In addition, I want to share this previous Forum discussion on neuropathy: https://rheumatoidarthritis.net/forums/neuropathy. You definitely are not alone. Hoping you can get some answers and relief soon. Best, Richard (Team Member)
I had the same thing. I developed a neuropathy in my feet. They felt like they were asleep all the time.
I did all those blood tests to check for B deficiency, and I did a Leflunomide holiday as well.
In my case it turned out to be Cryoglobulinemia. I did 2 infusions of Rituxan, and I can say it worked very well. I don’t know how long the relief will last, but I feel 10 times better now.
Best of luck!Hi I am on Leflunomide, which I have been told can cause tingling, but I have been advised to hold off taking a break until I see neurology, as I have been on these meds almost 2 years, so my GP did not think it was likely that this was causing the sensation. I am now getting very slight tingling in my hands, and painful aches in my arms which feel very heavy. Just short of 2 weeks left to go to my appointment. Hi
. I was mostly curious if you were on a biologic (which leflunomide is not), since RamsATW said that a biologic helped with their neuropathy. Of course, it does make sense to wait to see the specialist. Please feel free to keep us posted on what you learn. Best, Richard (Team Member)
Hi,
From the first real symptoms of neuropathy to a diagnosis of Cryoglobulinemia was about 3 months. My rheumatologist referred me to oncology, and I was tested for Multiple Myeloma (through a bone marrow biopsy. Very unpleasant).
The oncologist also ran a Cryoglobulin Qualitative with Reflex test, and that came out positive. That was the problem.
I then did 2 infusions of Rituxan, 2 weeks apart. It took about 2 months to start feeling the result (that’s normal). Today it’s been 5 months and I feel terrific.
I was also heavily fatigued. Like everything was a slog, and I was so tired. That has largely resolved as well.
One thing I think all of us here learn is the importance of patience. Nothing moves quickly like it does on TV. They have protocols they have to go through diagnostically.
I hope they find out what’s going on for you and that you get the treatment you need.
Hang in there!Can I ask if you are in the Uk or US? I am in the UK and an urgent referal for neurology is a wait of 6 weeks, which is what I will have waited just over before I get to the initial appointment. , I am so sorry you have been dealing with additional health issues along with RA.
And I think you shared some wisdom about patience and hanging in there! Living with RA and other health conditions can be a test of will and patience.
I am glad you are feeling much better and not as tired! That's awesome!
Best, Erin, Team Member.
Hi,
I’m in the United States.
I was sent to oncology instead of neurology. That’s where I got the Cryoglobulinemia diagnosis and treatment.
