pain in the tops of my feet and stiff hands.

[Shancan]

My doctors aren't really any help ... and I have no formal diagnosis. But since the birth of my second child 6 years ago the pain in my feet and my stiff hands has gotten progressively worse. It used to "flare" for weeks at a time and then it would go away. Now it is with me constantly and will flare to the point were it's hard to stand or even hold a pen to write. The tops of my feet will feel like daggers when I stand up and then gradually improve the more I walk. My hands however always feel stiff. The palms and my thumb. There is no swelling and I don't have RA. It will get so stiff that it can be hard to write and painful. I also have Red palms that I was told would go away after giving birth (but it never did) My GP has referred me for more tests but this is slow going and every month it seems to be getting worse and worse. One new element is twitching fingers. Can anyone relate or point me in the right direction so I can advocate for myself with my doctors?

[Andy1991]

Hi,

I have the exact same issue with my feet, hands and thumbs. My Rheumy keeps telling me it is osteo not lupus. I can sympathize with your statement that the doctors are no help. If you do not have any formal diagnosis mine is Lupus primary, Sjogren's secondary. Perhaps you might want to suggest this on your next doctor visit. I know this is not much help but it may be a beginning. I was just recently placed on MTX for relief and slowing of joint damage. I have taken Imuran for years, but my hands are so swollen from joint inflammation that my Rheumy decided to change. I understand your pain and I hope this helps.

[Shancan in reply to Andy1991]

Thanks for the reply Andy. Can I ask ... is it the tops of your feet that hurt? My doctors look at me funny when I explain the bottoms of my feet are fine but the tops are like knives jabbing into them every time I stand. I am sick of trying to explain things. But I have to continue because it's only getting worse.

[Andy1991 in reply to Shancan]

Yes. When it first started I did not notice it until there was pressure from my shoes on the top of my feet. Now it is painful all the time. Also, my toes seem to go numb. It alternates between my feet. It is usually the middle toes, not the big toe or baby toe. I know this sounds so strange but that is how I wake now. My feet aching on top and my middle toes numb and tingling. The best explanation I can give is when I was a kid and I would get my summer sandals and start wearing them and I would get that achy feeling on top of my feet from the sandal wearing between my toes and the top of my feet. My feet and toes would ache at the beginning of the summer from breaking in my summer sandals. I know this sounds so strange, but that is the best analogy I can give about the pain initially. Now the pain is much more painful than the breaking in of my summer sandals. My Rheumy keeps telling me it is osteoarthritis non-lupus related. I hope this helps. Forgive my crazy analogy, but that is the best way to describe my pain.

[Shancan in reply to Andy1991]

Any experiences close to mine totally helps!! I had never thought of osteo and my doctors have never suggested it. My GP says I don't have arthritis because I have no swelling ... buts it's gotta be something. So I will bring it up!!

[Mintychristine]

I can't give you much help but I have RA and Hypothyroidism I have red palms Immune?? I also have painful feet (top) and hands that dont like writing My hands aren't that crooked or anything but its the stiffness and flexibility that are effected Its immune related is my only conclusion.

[Shancan in reply to Mintychristine]

Yes the stiffness is crazy. The lower part of my palms up my thumb are stiff all the time. And sore.

[Mintychristine]

I have intermittent white finger Its all Immune related When you go the Drs mention it Sometimes we have so much to tell them its almost you prioritize in your head my scarlett palms I've deliberately gestured hoping its noticed but you get a sympathetic response to your overall response Who knew Immune diseases where so complicated I never did.

[Shancan in reply to Mintychristine]

I have an appointment with one of my doctors next week, I have decided I am going to do up "The List". I am generally very good at bringing in notes but I tend to leave stuff of the list that isn't bothering me at the moment. I am going to put it all down now. I am really so sick of all of this. Thank you so much four response! People think my red palms are weird ... I have never met anyone else with it.

[Chanpreet_Walia LUPUS UK]

Hi Shancan,

I am sorry to hear that you are not satisfied with your doctor’s performance. Have you thought about requesting a referral for a second opinion?

We published an article on our blog which discusses how you can change your GP or consultant here: lupusuk.org.uk/getting-the-...

Although you have not had a diagnosis for lupus, we published a factsheet on ‘LUPUS: and the Feet’ which you may find useful: lupusuk.org.uk/wp-content/u... .

Exercise can help reduce stiffness in joints for some people; you can read our blog article on pain management here lupusuk.org.uk/pain-managem...

To find out how lupus is diagnosed, you can download our free information pack here: lupusuk.org.uk/request-info...

It is definitely worth talking with your doctor about the symptoms you are experiencing as he/she can ensure you receive the correct help and advice that you may need.

Please let us know how you get on, wishing you all the best.