Hi, was diagnosed with seronegative inflammatory arthritis in April. I have noticed that my fingers and toes are permanently cold and can turn white.Many years ago so was told I had Raynauds . But other than in very cold conditions it has been quite settled.
Does Raynauds flare up more with arthritis? Also now got high BP which I never had before.
One thing after another at the moment!
Hiya Hc, I noticed my feet are always cold since I got arthritis in my knees. Still in my winter socks! And keep getting cramp in my lower legs and feet. Never had these problems before. Maybe it affects circulation. Will have to move to a warmer country!
Cramp! Yes me too, in feet and lower legs mostly, occasionally in thighs. Never had this before as bad. Mostly at night. Yep, also in winter world-class and socks in bed. Such a good look. But needed. Strange these extra symptoms. Can assume it is all linked?
Maybe summer (haha) will help
I find magnesium supplement helps stop cramp. with appoval of consultant
Hi. I keep meaning to leave this community as feel a bit of a fraud here. But I stay because it’s where I started many moons ago and think it’s maybe helpful to point anyone with Raynauds to the SRUK community here where you can learn more about primary and secondary Raynauds.
Mine started as seronegative RA 13 years ago along with sudden onset Raynauds and Erythromelalgia. However it turned out to be Systemic Sclerosis, Sjogren’s and HSD/ EDS - plus hypothyroid and degenerative disc disease. I really hope yours stops at seronegative IA/ RA but in my case the late onset Raynaud's was the clue to my much rarer stuff.
I also have hypertension - which it turns out is a godsend where secondary Raynauds is concerned as the treatments such as nifedipine, amlodipine, sildenafil and now, iloprost infusions - all lower the BP so you don’t want low BP with severe secondary Raynauds. Also could be a clue for you that more systemic vascular stuff is occurring along with your inflammatory arthritis. So worth telling your rheumatologist so they can run extra tests and factor in and treat the Raynauds and high BP combo as a matter of urgency
Thanks so much. I never want to be someone who self diagnoses, but with so much going on health wise, I did see about links of these symptoms and vascular ( I have had under active thyroid for many years btw ). So I appreciate your reply and advice.Will definitely get drs advice. It's on my records I have all these conditions, but sometimes I think it's us as patients who try to join all the dots?
Same here re self diagnosis. But having been originally misdiagnosed with seronegative RA all that time ago I’m also now a sleuth and a half! For me personally inflammatory arthritis and hypothyroid were/ are a walk in the park compared to systemic scleroderma. But obviously the former was milder for me than it is for many here - whereas systemic sclerosis has a much worse outlook with far fewer treatments due to its rarity. So it got away with attacking my entire gut meaning that I now need colostomy/ ileostomy. It’s also very heterogeneous antibody wise compared to IA so be sure your hospital lab covers all the known scleroderma & myositis antibodies because you may not be seronegative after all where it comes to rarer rheumatic autoimmune conditions. Here’s a great link I found and recently shared on SRUK to explain all the antibodies and their unique profiles in case it helps:
dermnetnz.org/topics/system...
Thank you Ted. It's a fine balance between research a potential health issue versus scaring yourself stupid and unnecessarily. But we have to gain an understanding of what is, or may be going on in ourselves.I have contacted my drs, and will copy in your advice 're tests when I hear back from them. Being seronegative has already caused delays in treatment, so I try to be more on the ball with things like this.
Appreciate you sending the link and your time in replying. Take care
Great reply - and yes spot on re seronegative being more slippery and needing us to research - I was same with RA and Sjogren’s, Lupus etc. Due to reading up on secondary Raynauds I recall asking a rheumatologist (no longer mine very thankfully) if I might have scleroderma about 8-9 years ago. He replied witheringly that I was choosing the “worst one” and that was one I certainly didn’t have he stated vehemently! Then I was retested by a different chap in another hospital 3 months later, once off steroids, and up popped high ANA with pattern pointing to scleroderma.
On the plus side though, if you’re truly seronegative even for Sjogren’s, Lupus etc it does seem to have a better outlook than if you carry a strongly positive antibody. The exception would be PsA and AS I think because these are auto-inflammatory. It’s only since my very rare (diffuse) scleroderma antibody showed up that I’ve had rapid disease progression. So 🤞🏻 for you on this but please don’t stop pushing because things can and do change! x
For me, I do need to ensure my diagnosis is complete. I have just been concerned all the ' extra ' symptoms may be missed, it's like we are seen on individual symptoms of can conditions rather than as a ' whole ' if that makes sense?. But I can crumble on face to face or phone appts. My preference is to write a message to the relevant medical staff, as I can take my time, be more clear and concise and get my message across better.Of course we can't always do this, but I do so if possible.
Your post sounds so familiar. My feet have always been cold but since RA reared it's unlovely head I have lost a pulse in my left foot leaving it purplish, varicose veins in left leg, hypertension and Reynaud's ( which predates RA). Who knows what causes what. I blame my age.
Age! Yes, much of all my problems have worsened or been diagnosed in the last 2 years. Am 57 now and kind of hoped this stage of life would be quieter. Not so!
I reckon I'm over a decade older than you but life is still good. It's a different kind of good than I expected but good all the same
I think for me as all this seems to have happened in very quick succession it will take me a while to process everything before I can accept all of it?Perimenopause has been just awful beyond belief, but finally got that stable and always wanted support from hrt, not expecting a 10% symptom free state.
Then last summer osteoarthritis diagnosed, then December fibromyalgia ( it's taken me a long while to get my mind and body working with that and is still ongoing ) and then in April, finally diagnosed with seronegative IA!
I do agree in the fact we are better off accepting this is a new ' normal ' Its just for me, and I know for others, that just when we are able to accept and begin to live with one difficult condition, the parameters alter with the next biggie!
That's without the additional health conditions that plague us.
I'm sure I'm sounding down about this, but I consider myself quite realistic. But it can take a lot of time to get over the shock of any condition that is pretty life altering for the person and those around them.
But I've done it many times now , and given time I will work the best ways with all these health conditions, as individuals and as they affect me in conjunction with each other.
But thank you Gnarli for reminding me we can, and do, eventually understand ( yet another !) new normal guardian indeed be a good one. 😁
Hello. Yes have all that. Has anyone tested your ANA, CRP, ESR, FBC (ie nuetrophils?). I have Sjogrens and lupus.. but not diagnose until last 7yrs ago. Raynauds since a child. I started taking nifedipine (or adipose, or tensipine.. all the same) 7yrs ago.. Life changing! Get your rheumatologist to as the GP to prescribe.. or jsut ask your gp. Best thing I ever did.. as I had no blood in my fingers and feet (excruciating to walk on). This is the pic of my hands pre nifedipine(8yrs ago). I have to have the MR (slow release) nifedipine as otherwise my dodgy ticker goes out of rythym even more.. so it's fine with that type.
No link to the inflammatory arthritis... well, not that I'm aware of.. . I've just had it since I was 10 I think.. my arthritis was minimal at that point.
Hope that helps, any questions, happy to help.
D
oh and don't go on prozac if they suggest it as apparently it helps raynauds.. I had to try it once when there was a huge shortage of nifedipine, and I had the most horrific nightmares almost immediately.. It's meant for those with depression etc, not raynauds (in my humble opinion!). There are also other options.. but they never worked - nifedipine (or the brand names Tensipine, Adipine - they're all "pine's") is brilliant. I could finally feel to get my keys out of bag outside the house to get inside, and less of the awful cyanosis pain ie when the blood starts to come back and your hands go blue/black, the red or whatever the order is.
Oh yes, and it is usually prescribed for those with high blood pressure too... so that'll help.. Make sure you take photos of when you get an episode.. and show the docs.. All the best, D
Thanks so much. I am actually on amlodopine for the newly raised BP, I hear some people find that useful - not yet for me but let's see how that goes. When raynauds was diagnosed some 25 years ago I was put on nifedipine and took that for several years until the raynauds seemed to settle down... Until now. Grr.
I know ANA, CRP, ESR have been checked each time I am at hospital.
Never knew Prozac was an option. I was prescribed that once for another health issue and wouldn't even open the box. I just knew it wasn't appropriate. But it may work well for some of course.
I sent a message to Dr who should contact me Monday.
Thanks again everyone
Wow, so many shit conditions, thanks all for bringing them to my attention so I can look out for symptoms just in case. As a newbie this is all a steep learning curve. Hope you get your feet warm Hcats! My son has an electric foot warmer under his desk at his dads because its a cold house. Might get myself one! I found the best thing to bring me out in a sweat is vacuuming!!
Hmm. Would prefer the foot over vacuuming any day! I think it helps to keep moving though, whatever we are doing as you say,there's a lot of overlapping symptoms with conditions, but if we are worried do think we are right to ask and push further if need be.As you say as newbies there's a lot to process and so know these forums with real people's real experiences are the best place to go to first
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