Those with raynauds help

I have a long history of illness. All signs say lupus, and I'm on hydroxychloroquine but without a definite diagnosis (missing the vital antibody, but ANA is 1:1280 and we are assuming lupus right now). recently i've been getting other symptoms. It's been very cold and my big and second toe on my left foot are going numb, and they feel freezing cold. They stay numb for quite a long time (couple of hours?) and my underfoot looks patchy yellowish white during these times. I get some milder problems on my right too. Also my toes (especially big toes) have been red, swollen and very painful. My second toe on my right went painful on the end and the end turned into a sore and then chunks of skin started falling off. Now where my toes are resting on other toes, sores are appearing, very very painful sores, two so far on my left and one on my right and there are very painful pressure points appearing on the places that hit the ground most when I walk - under my foot.

It is currently extremely painful to walk, and I'm trying hard to keep my feet warm, but I'm getting the numbness happening daily (despite trying to keep my house warm enough). Also my nails on both big toes and second toes have a strange horizontal ridge on the nails - so the nails are almost separating at the ridge, online it seems to beau's lines? I've had this for about 5-6 years, (im 3) the lines grow out and then come back, but I have a long history of being ill and I've had a lot of tingling in my feet for years, and put it down whatever is wrong.

I am currently 11 weeks pregnant too and I can't see my rheumy until the end of the month (it was a 2 month wait to get in, is this raynauds? And what can I do about this pain? I can't walk properly and I have a 2 year old to look after.

19 Replies

  • helloHappy

    I suffered similar symptons and it was arterial problems which the Raynauds had highlighted and had stents fitted on both arteries to my legs .I would reccomend that if you cannot see your gp as you are pregnant you visit your local walk in clinic or go to A&E.Take care


  • I have similar whitening to yours only in all my toes and not as severe - also the Beau's lines. However unlike you I'm not pregnant. Have you seen your GP about this yet? It sounds urgent with the ulcers starting to form. I would see your gp asap or go to A&E walk in clinic. You don't want to risk infection when you are pregnant.

  • Hi there

    I have Raynaud's in my hands they go cold numb and white then when the color comes back they go red and blue and tingly but several years ago I got vasculitis in my fingers it was very painful I had chilblain sores in winter for a while prior to this I was put on corticosteroids for a while they and various other treatments didn't work so I was given chemotherapy for twelve months that cured the vasculitis but at 42 also had early menapause and got terrible problems with yeast infections on my feet and my tongue I have systemic lupus and underactive thyroid gland plus IBS and suffer depression with bad anxiety and insomnia and my joints are constantly playing up its possible that you have a vascular problem going on in your feet and it needs treatment as soon as possible but given that your pregnant I'm not sure on your course of treatment did the symptoms start before or after the pregnancy if after then it may be the pregnancy that fetched on the feet problem and is a bad lupus flare up ask your lupus doctor if its possible you have vasculitis in your feet but do it soon as its a dangerous condition if left as it is inflammation in your blood vessels hope you find a cure very soon and start to feel better best wishes to you

  • Hi Lupuslady, just looking at your reply to happy p., I noted you have systemic lupus and IBS. I have SLE and APS but now have a problem with my bowel. Everytime I eat within 10 mins my bowel is very painful and I have to go to the loo. Were these your symptoms. I can go to the loo upto 10 times a day after drinking and eating (almost immediately), side always hurts but is worse then. Regards Diane

  • Hi Diane 1428

    If I get bowel pain its mostly in the evenings after my tea I bloat up and get awful wind too I am mostly ibs-c but get bouts of the other way about every 2-4 weeks which leaves me feeling like ive got sores scattered along my bowel it makes my bladder irritable too ive tried various medications from my gastro- Dr but not much use really I find camomile tea good it calms the bowel and fennel tea is good for trapped wind and constipation I have a passion for thin arrowroot biscuits but too many and I struggle to go to the look for a few days I'm a very anxious person and it is a big contributing factor for IBS patients I very rarely get periods of calm with my IBS its there niggling away mostly every day a water bottle on my tummy at nights helps me too if you don't suffer with heartburn or acid reflux then peppermint teas good too I can't drink it as it makes acid reflux symptoms worse its not a nice thing to cope with I hate IBS more than my lupus !

  • Hi Lupus Lady, thanks for your quick reply. I dont think this is my problem then. I have a terrible pain in my bowl 24/7 and when i eat or drink I have to go to the loo within 10 minutes. My doc. is giving me a test that he doesnt know what it is for but it is new to the surgery so he wants to give it a try. Im getting worried as all I get is nice talking to you and how interesting lupus is. I wont be rude and tell you what my reply was.

    Best wishes Diane

  • Hi Diane

    Yes we feel like specimens under a microscope at times I think doctors let us suffer sometimes just to keep them in a job I wish I had a magic wand because if I did it would be worn out by now by me making sick people well and happy I hate watching people or animals suffering it makes me question why on earth are we here if this is as good as it gets for lots of people

  • Hi lupus lady

    Just seen your IBS comments and wonder if you've tried Mebeverine for it?. It's a prescription drug that my Mum takes and it's helped her a lot. IBS is a horrible condition to live with!. X

  • pls wat is the name of chemo u had that helped? For the past 2years i have had very sore finger. I cant step outside witbout wearing my gloves cos it hurts alot. My entire finger tips are covered with sore. Every little touch send the pain to my head. I have never had a pain free day. I have to use my teeth to open a fruity shoot drink for my 3yr old becos my had cant to the job. I have had rhetoximab, illoprost, 80mg of neifedepin , 20mg of steriod. Pls i will like to know the chemo that helped u so i can suggest it to my drs

  • Hi ijeasike

    The chemo I had was cyclophosphomide it was given to me by intravenous injection it was a twelve months course I had some steroid drips in between too but I must warn you first the treatment caused early menapause in me and also left me open to fungal yeast infections and you could loose your hair during treatment I was lucky didn't loose mine and it also makes you feel very ill for a few days after each dose extreme sickness tiredness etc but for me it cured the vasculitis in my fingers my problem started one winter with what appeared to be chilblains on my fingertips and the year after they came back worse it felt like being slit by a razor blade if I banged them just slightly it was very painful plus I had pain that traveled up my arms at night when I was in bed it kept me awake vasculitis is a dangerous condition of inflammation in the blood vessels it needs treatment with great impact at times which is what my lupus doctor did with me I feel your pain and hope you get a cure very soon best wishes to you

  • Cyclophosphomids was the 1st chemo i had in 2012 but mine was 4 6months . It helped solve the problems of my kidney. But after then my fingers started dec 2012. I have had illoprost,plasma exchange and rhetoximab which i had 4 4wsekz october 2013 then antber 4week course in december 2014. But d last rhetoxomab hasnt made a difference so i will suggest cyclophosphomids to my dr. They just increase my steriod which has cost me averscular nerorosis AVN. Thanks for the information

  • Hi ijeasike

    Looks like you have been having a terrible time I feel for you I am suffering with thyroid issues just now life is difficult at times isn't it one day at a time is the best way to go I wish you well and will keep my fingers crossed for you good luck with the treatments stay strong

  • Thanks wish u well too.

  • Hi Happyp

    I agree with your previous replies that you need medical treatment quickly!. You could also see if you could see your Rheumy earlier via a cancellation by ringing the clinic. I have Raynauds which has improved with 20 mg Adalat a day, get numbness and tingling in feet and legs due to nerve problems hence me saying a Rheumy appt could help you. Also being pregnant may give you different symptoms which need checking. Good luck and hope you improve soonX

  • I do know your symptoms as I also have them. After a period of time my nail separates from my toes and then everything starts again. Also have it in the hands and the tip of my nose. I have APS also with lupus which is Hughes syndrome which means my blood is clotting. As you are pregnant you really must see someone straight away and notooverthehill is absolutely right. Go to the A&E. You could easily have APS and this you dont want undiagnosed while pregnant. Best of luck with both pregnancy and your visit to the A & E.

    Regards Diane

  • I have SLE lupus and had the same symptoms it was very painful in my hands and feet i couldnt walk are use my hands at all the skin kelpt peeling really bad. Also my nails on my pinky and big toe (as if i slammed it in a door but didnt) came off its lik thy poppd up and grew off. The doctor said it was steroids...hope u feel better and congrats on your pregnancy!!

  • thank you for all your replies. I have been tested for all the clotting disorders a few times, and just recently when I saw my pregnancy specialist (I have other issues which means I need a cervical stitch to stop me losing the baby in the second trimester) and clotting wise everything comes back fine. but I am still on the 75mg aspirin, just in case. This morning I woke up with extreme numb, tingling feet on both sides and it lasted 7 hours before finally starting to ease up. I considered going to the hospital, but my feet look pink, they weren't cold or white this morning, and they seem warm. I will phone my rheumy tomorrow and see if they can get me in earlier. I haven't seen him for nearly 6 months, it's ridiculous, otherwise I'll have to see my GP, who usually proves pretty useless with my autoimmune symptoms (they told me my ANA was 'mildy positive and not significant' for 6 years and the fact it was painful to breath on my left side was indigestion). i should add my hands are a little "fuzzy" today too.

    I do suspect that pregnancy might be making it worse, I also have gestational diabetes (already), but I'm not sure what there really is to do apart from try to stop the sores getting worse? could they be chillblains?

  • diane1428

    Regarding your bowel symptoms. I wondered if you have been tested for coeliac? I had symptoms very similar to yours - bowel pain and needing to dash to the loo within ten minutes of eating. My GP diagnosed me with coeliac through an elimination diet, ( at that time I didn't know I should have had a biopsy do everything), cutting out gluten completely. My symptoms vanished almost immediately. If you do go down the road of getting tested for coeliac I reccomend you have the biopsy done. If you do, and get a positive diagnosis, then you can get gluten free food on prescription. At least you can in the UK. It was too late for me. The biopsy needs to be done before you stop eating gluten. I would have had to have eaten gluten again for at least six weeks before the biopsy. I tried but one slice of toast made me really ill. I couldn't have gone six weeks feeling like that.

  • I totally understand what your going through. For the past 2years i have had very sore fingers. I cant step outside without wearing my gloves cos it hurts alot. I have to wear rubber glovez inoder to have a shower, do the dishes .this just to reduce get a direct contact with water.My entire finger tips are covered with sore. Every little touch send the pain to my head. I have never had a pain free day. I have to use my teeth to open a fruity shoot drink for my 3yr old becos my had cant to the job. I have had rhetoximab, illoprost, 80mg of neifedepin , 20mg of prednisolone. I hope that thing get better for you.xx

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