Hi all, I wanted your opinions and wonderful knowledge on this, my hands. I have been flaring for a few weeks now, and no new Rheumy until the end of this month. He will be new to me, and I have waited so long to get an appointment. I will only be having a zoom video consultation with him. Any ideas on how to handle the zoom consult, as it is my first one ever.. So, my Raynauds seems to be taking a turn for worse with my hands, I am having so much pain, tingling, sores, and joints swell, then contract. I have trouble typing, and holding objects. I can feel cold, but no hot on them. Has any one gotten to this with hands or other joints? My last Ra factor in January came back just slightly elevated, and my Cardiologist is very concerned, has he thinks something else is going on with my symptoms driving my blood pressure to high. I have swelling and contracting of many other joints and tendons, also, seemingly some organs to. As I feel them tighten, swell, then days later contracting so tight, it is hard to move, eat, or do activities. Any ideas, opinions, on any of this would be gratefully appreciated. Thank you... my peace and blessings reaching out... Thestormy sunshine
My Hands: Hi all, I wanted your opinions and... - LUPUS UK
My Hands
Hi there. Have you had a more extensive panel run than Rheumatoid Factor lately? I ask because with the Raynaud’s and the swelling you’re describing, you might want to ask about Scleroderma. My hands have looked and have felt similar to what you’re describing and I was misdiagnosed with RA, then diagnosed with Sjogrens Syndrome and now Systemic Sclerosis.
The latter disease often causes fluid retention in hands in the early stages which can look very like RA but it is different. It’s the layers just under the skin and tendons that are affected (hardening and tightening) not so much the joints. Just a thought as it’s a rare disease and would normally, but not always, show in ANA and more specific antibodies. The worsening Raynaud’s would be the thing I’d focus on with hand swelling and pain and any GI probs mention them too. If you have good photos of Raynaud’s on a laptop you could always have this ready and open on another device to show them perhaps? And show them stuff like any red spots or rashes on hands and face.
Best of luck 😊
Hi there, sorry I am replying late, Wonderful ideas you have here, thank you very much, I greatly appreciate the information. I wrote your ideas down for my video visit.You are on the right path, as my ANA is sero negative now. But years ago, when diagnosed, my ANA's came back high, and showed much.I am taking photo's off my cell phone, so I hope to show them, as I do not know how to share photos live, on zoom.. I am very grateful for your information, and possible directions here. You be well, take care, and send you all my peace, blessings. Thestormy sunshine. Xxxx
Sorry can’t give you any advice but just wanted to say I’m so sorry with everything going on with your poor hands - sounds awful - hope your zoom meeting goes well xx
Sorry for the hard time you’re having stormy sunshine, apologies for no advice on video consultation but I’m sure someone will have some great advice.
I totally relate to your symptoms, and equally have suffered high blood pressure with flare of symptoms, sadly again I have no idea why all this yet either.
But I can give you my best wishes, I had telephone consult, and it was different and with weird symptoms, as I said to neuro who had no clear idea obviously, that all I can do is say it as it is, even if sounds strange and extensive. Just show and say as it is stormy, they will be able to see which is good . It’s weird it’s like my muscles or tendons whatever go so tight and I can’t move properly, and weirdly the facial specialist said it looked to her like my eye muscles were staying contracting like they didn’t know when to release, and I get dips in feet hands and above eye where pulling so tight. My arm muscles are like hitting stone just solid when this happens, I had scan on leg and arm because stayed solid for long time, days but they just said scan normal,my fingers are so solid I can’t pinch skin on them or straighten for most of the time and I’ve never found out why yet, but look forward to an answer as debilitating as you say.
I do hope you you get some answers and that you begin to feel a better soon.
🙏🤗🐝
Hi my crafty, dear Stiff, sorry so long to reply, symptoms only let me do a bit these days, but I take it in stride. I know you have first knowledge on conferences, as you did very well. I have a video conference, and that is new to me, I do not know this Doctor, but that may be a good start.We do have many symptoms in some ways here. I sure will share my experience and what this Doctor says, as it may help you to..Yes, I get those symptoms to, tight, and contracting. Even upsets my GI tract.. My left eye does that thing, and then feels like it sucks into the back of my head<LOL.... Who knows, I am just thankful and grateful for this Hub, and members like you, and all. You lift my spirits, and always answer... Be well mm friend, much love, and peace to you, and yours. Love, Thestormy sunshine Xxxx
Never mind me stormy, I just want you to get some answers and help with your problems. When like this help can’t come quick enough can it 🙏 no worries stormy if you can’t reply it’s enough sometimes to muster the energy to post.
Rest well and I hope you begin to feel better and hope all goes well with your video appointment , I’m sure it will 👍🙏
Kayhimm and roarah have had them and all good 👍 you will do fine 🙌🏻 Just as when you go to appointment but you don’t have to go, they come to you 👍😀
Love andBest wishes 🤗😘🙏🐝
Stormy - I have by now had four telemedicine visits and all were successful. You will get used to it pretty fast, I think, and be able to express yourself just like you do in the office. The doctors won’t have a computer in front of them!
As Stiff said, just explain the problem as you have with us. You can even show photos. I did. It worked. The doctor can determine if you need an in-office exam or further testing.
Best of luck!
XK
Hi Kay, thank you for your support, and wishes. Can i ask how do I share photos on zoom meeting? How did you do it. I do have questions written down, and ideas from you, and so many here... Hope you are well..Yes, Stiff did a great job with the phone conference, and I hope I have a positive outcome too. Take care, be safe, and sending my blessings there to you. Hows the city doing??? Love, Thestormy sunshine Xxxx
I just showed a photo that was in my iPhone while I was on my iPad. It was apparently pretty clear.
The city thinks it is Mardi Gras, and the governor is going to punish us if we don’t behave.
XK
LOL, that's what I thought, so please keep safe, keep together, but distant, and have some great days there with those you know, and love.. Just catching the beads!!!And thank you for the idea with the cell phone, ya, some of my photos are on there, so I will definitely offer them.. Be well Kayhimm, many blessings, and love, thestormy sunshine
Hi there, what is you usual therapy fir flare ups? Do you have a steroid taper or something else when flaring? I didn't have such bad Reynauds like you but i manage it with a few different therapies, nitroglycerin cream i put on hands and toes, i think when Reynauds is severe usually docs prescribe nifedipine tablets but your doc would know if you are a candidate for that. For pain in hands i use aspercream. I use it up to four times a day. However when flaring up none of those helps as much as steroids...
Thank you miccika, I see you have some knowledge of raynauds, an I appreciate your input. As of now, nothing... Aspercream is a good idea, and I will try it. I have no rheumy right now. Waiting for a new zoom visit next week.I wrote down the other medications you mentioned here, so I can ask the new Doctor...I was on steroids for years, but I am now allergic to them. This is very bad for me, as many of our conditions warrant the use of them...How long may I ask have you had Raynauds... Take care, and thank you again for the useful information. peace and blessings, Thestormy sunshine Xxx
Confused!
question if any one knows
Finally plucked up courage and went to see my GP!
My Feet
Help getting a diagnosis???
