I have had raynauds for a number of years but this past couple of winters has been unbearable and I just found out that my doctor never referred me to rheumatology even though he told me he did so I’m back to square one.
its long but I’m going to list my symptoms and wondered if anyone has similar?
- [ ] Redness and swelling in right fingers and toes and red lumps in right fingers
- [ ] Pain and stiffness in all finger joints and toes but worse on right hand side
- [ ] Worse in morning
- [ ] Severe pain if I knock my right fingers or toes
- [ ] Constant pain in eyes, stinging/burning and feels like straining at back of eyes
- [ ] Red eyes, swelling, itchy
- [ ] Headaches at least 2/3 times a day, mostly at front of head/temples lasting around 10 minutes each time
- [ ] Muscle weakness, e.g. have to rest arm after brushing hair
- [ ] Tired all the time
- [ ] pain in centre of chest randomly
- [ ] Short of breath sometimes
- [ ] Sometimes stinging/prickly sensation in face, hot flushes
any help at all would be muchly appreciated as the swelling, lumps and pain have started again for this year
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Mellor12345
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Hi there, there's a lot of symptoms, I would suggest going back to your doctor and asking for another referral a.s.a.p. You should not be suffering like you are not in this day and age. If your doctor refuses then see another doctor. Good luck with everything and take care with yourself, get hand and feet warmers and a good warm hat. Xx
I agree with Verily. Press to get a referral. There are a wide range of broadly related autoimmune conditions but you’ll need to know which ones to get the right treatment. Eg I’ve recently had it suggested to me that scleroderma is a sub set of lupus?
Meantime - keep warm, yes. Absolutely. Heated gloves if possible. Also keep your skin well moisturised with fragrance - free cream. I use Aveeno but Neutrogena etc are good. And make sure you keep your hands clean and don’t risk those sores getting infected.
For your eyes, try Hycosan eye drops. With the red or the purple box is very soothing. And a warm flannel held over your eyes 2-3 times a day.
Gently massage and stretch your hand and finger joints at least once a day. There are some videos on the SRUK you tube channel. And if it is Scleroderma (and maybe other conditions) then your body will struggle to absorb minerals and vitamins in the needed amounts, so think about taking Vitamins D, E, C and B, as well as magnesium citrate to boost levels.
‘Enhanced’ turmeric with curcumin, ginger and garlic can sometimes help with pain from inflammation - though these (and bit C) can come through diet if you try hard!
“Eg I’ve recently had it suggested to me that scleroderma is a sub set of lupus?” - eh I’ve never read or been told this? But it would be good if it were true because Lupus is more common, better understood and has more treatment options.
Personally I suspect scleroderma is its own umbrella with many subsets. My rheumy js a Lupus expert and I’m her only scleroderma patient. From what I’ve read SSc carries a greater disease burden for sufferers and higher mortality than Lupus, RA, Sjögren’s or others. But it would be great if the wider Lupus umbrella could help us access more research and targeted treatments! I wonder what the Leeds and Royal Free Scleroderma centres say about this idea? Is it a “thing”?
Your hands and symptoms are very similar to mine. I have cramp pain in right forearm this year which I didn’t for previous 2 episodes.
I ended up seeing a dermatologist 1st - as GP thought was dermatitis- then progressed through rheumatology- I had to pay for all but just needed something to happen - recently reviewed and been told that it’s severe Raynauds. Meds are Nifedipine 10 mg slow release am and pm ( I’ve very low blood pressure so unable to tolerate Sildenafil and more Nifedipine) Vit D mouth spray and since last Rheumatologist appointment Trenthal 3 x a day with Aspirin which I believe treats peripheral vascular disease. They likened the pain in forarm to migraine - as it’s so easily triggered and apparently similar mechanism.
Since starting meds I’ve still got swelling but so far skin breakdown has reduced quite a bit and one area on little finger which started to look like it was going to break down seems to be improving.
I now use a heated poncho thing if I’m sitting for anytime and think the direct heat down back and arms helps - having heating on full pelt just made me keep fainting ( not great when you live alone)
My name is Mark. I suffer from “Systemic Sclrosis”. My problems started in a very similar way to yours. It took my idiot doctor eight years to diagnose my
Illness. YOU NEED TO ACT FAST. It is imperative that you get some medication to jump start your circulation. I am not going to tell you what I’m taking because that is the Rheumatologists’ job.
I would strenuously suggest that with great urgency you do four things:
1): Get on to Amazon and buy yourself gloves. HEATED GLOVES. Thin gloves, thick gloves, layers of gloves. Get yourself covered for every eventuality to keep your hands warm in every situation. Do it NOW.
2). Sign on with a new GP on Monday morning. Insist it is an emergency and demand an appointment immediately. DO NOT TAKE NO FOR AN ANSWER.
3). Insist on an immediate referral to a Rheumatologist. If it’s geographically possible for you get them to send you to Professor Denton at the Royal Free Hospital in Hampstead. He is the top man in the country. Alternatively,
Dr Vijay Hajela at the Royal Sussex in Brighton.
Wherever you are get your new GP to hand you a letter of referral there and then. Get a good book and go to your local A&E department and see the duty Rheumatologist. GP’s will not have the knowledge (generally speaking) to prescribe you the correct medication. This is a very rare disease 1 person in 9 million is the nominal statistic. It’s not common. We can’t all know everything and you need specialist treatment FAST.
4). Go to your Solicitor and sue your foolish original Doctor for malpractice. You have been treated (or rather not treated in the most appalling way and you must be compensated for that). It’s utterly unacceptable that you have suffered this way.
5). Apply for: ESA (Employment support Allowance). Also, PIP Personal independence payment. You are going to need them and the sooner the better.
The last thing in the world that I want to do is scare you. I want to help you not turn you into a nervous wreck. Don’t forget I am not a doctor or qualified in any way to diagnose you. However, having suffered for twenty plus years with this horrible illness I do know a little about it to say the very least.
The main thing is to keep your circulation going. If you smoke. STOP. If you drink caffeinated drinks. Coffee, Tea etc. don’t. I do still drink Earl Grey tea but Coffee is a very rare treat. Try taking a couple of Aspirin every day. They will help until you are sorted out properly. Be careful though don’t upset your tum with them they are quite aggressive in that department.
You MUST STAY WARM. If you get cold you are endangering yourself so wrap up warm. Turn the heating up and stay warm. That’s why I mentioned the various allowance’s you will need them to cover the heating costs.
PLEASE, PLEASE Follow my advice with the Doctor. You need to get a decent and sympathetic GP on board ASAP. I know what this level of pain is like. Trust me when I tell you. YOU DON’T WANT IT. I am on 32 pills a day plus 230ml of Oxycodone liquid. Had I been diagnosed more fast things would be different. SPEED is of the essence. Get it sorted out NOW. You can relax and enjoy Christmas then. Don’t worry, there aren’t any horrible tests or sharp things involved. The worse thing about it is all of the waiting around. Hence, good book.
I hope you get it all sorted out fast. It’s horrible but once it’s under control you will be fine. Also, if you are tired. Sleep. There’s no getting round that one I’m afraid. I thought id push through it but it’s not like sports fatigue. You will simply fall over if you don’t get enough sleep. Keep up with gentle exercise as well.
I wish you luck and good doctors. Take care of yourself.
I can’t add much advice to what others have said. It is extremely important to go to your GP and insist on a referral. Your GP can prescribe medication which helps Raynaud’s. Your hands look very like mine and I have Secondary Raynaud’s. My primary diagnosis is now systemic sclerosis.
Only a Rheumatologist is able to determine what is causing your symptoms. I have additional symptoms such as the dry eyes and mouth: there is overlap in many autoimmune disorders.
i have these lumps/bumps which spread very fast on my hands and feet but they last for months so not sure if it would class as a rash? It’s strangely always on my right hand/foot too, never the left
Hi,I get the dusky purple/blue colouring on the back of my hands as per your first pic, and also the red bumps/rash in your second pic (which my Rheumatologists always describe as chilblains) I had the capillaroscopy tests and Thermology tests on the hands, and was diagnosed with Secondary Raynauds, and potentially Systemic Sclerosis.
Since starting Nifedipine last Autumn, my symptoms have been greatly reduced, and only had one short instance in winter of the red bumps/rash (which is also accompanied by swelling of the fingers).
Keeping the body/core warm is essential, to keep as much blood supply flowing to your hands as possible.
Also a very good moisturising cream for the hands and skin around the nails is essential to prevent problems - my GP recommended Dermol (prescription or over the counter) and its the best thing I've ever tried.
As others have said, push for quick referral and testing , photo evidence can help with sceptical doctors.and rheumatologists.
hi I saw on a SRUK webinar about Raynaud’s that one of flags for secondary is thumb involvement and it looks from your pic as if your thumb suffers too? You hand looks very like mine. It’s taken me 12 years of Raynaud’s to get systemic sclerosis confirmed as my main rheumatic autoimmune 6 months ago.
Fortunately I was diagnosed with RA in 2011, shortly before my Raynaud’s suddenly showed up in early 2012 so it was taken seriously by my GP and I was put on nifedipine - which I didn’t tolerate as legs kept swelling and sildenafil caused me severe nose bleeds so now I’m on monthly Iloprost infusions.
Re your other symptoms tbh they could be part of any of these diseases including Sjögren’s - which I was diagnosed with 7 years ago by lip biopsy. Also Lupus and Myositis.
I agree with others who have replied - insist your GP refers you urgently to rheumatology but also runs a full battery of blood tests including FBC, ANA and inflammation. I had to travel from Scotland to Royal Free for unequivocal diagnosis of scleroderma but there are centres of excellence in Leeds, Bath and other places. Try to find a place with specific expertise eg nailfold capilleroscopy and other microvascular testing facilities 😊
thank you everyone for all your extremely helpful replies. For those who have tried/are on Nifedipine, how have you found it? I’m already on a very high dose of Propranolol Hydrochloride and Amitriptyline for my severe aura migraines so they reduce my blood pressure too. When I added Nifedipine to the mix I was very faint and dizzy to the point that I couldn’t walk properly or see my computer screen. Has anyone tried or know of any alternatives that I could research more? Thanks
As well as Iloprost infusions for one day a month I take 100mg Losartan daily for Hypertension. I’ve never found that my BP gets so low that I’ve had to stop either treatment and Losartan can be used for Raynaud’s too. I did really struggle with nifedipin. None of these meds stop Raynaud’s but they can really minimise the damage eg digital ulceration.
I have genetically low blood pressure. I wasn’t taking the meds you are currently taking, so your reaction may well not be the same, but I did find nifedipine et al made me faint headed. However, meds seem your best first line of action, and a GP can prescribe them.
I have Iloprost infusions once a month. The advantage with them is that my BP can be monitored regularly to avoid it going too low.
Hi I have loads of those symtoms so I feel your pain - literally! Weird that my hand right is the worst too. Sounds like you have chilblains, as I do, and the tips of my fingers are so painful, more so like you say if knocked. I can't do day to day tasks without it causing pain. I have Secondary Raynaud's Phenomenon/an autoimmune disease.
Look luck with your referral and I hope the pain doesn't get any worse.
I'm so sorry your suffering so much. Hopefully you are being seen by a Rheumatologist now. If not request your GP to refer you I have Raynauds; milder than you, but was referred straight away to a Rheumatology Consultant. I'm seen regularly. Take care of yourself
Based on your symptoms it could be Scleroderma. I have Scleroderma. I have some of your your symptoms, not all.
It was confirmed a month ago (end of October), I was prescribed medication at that time.
Initially I saw a respiratory specialist, she suspected the Scleroderma and referred me to a rheumatologist, she organised blood tests and it was confirmed.
I would recommend you see a rheumatologist ASAP, and mention all the symptoms.
Best wishes, Kind regards - please provide feedback on your outcome(s).
Hi, I went to my gp last year due to severe raynauds and shortness of breath, I never actually saw my GP but did get a referral to a rheumatologist who sent me for an mri and loads of tests, turned out I have systemic sclerosis which has caused interstitial lung disease, I am glad I had the purple hands or I would of just ignored the breathing. Markers for the lungs and systemic sclerosis show on blood tests if you are sent for the right ones. INSIST by email that you want the referral, your hands look like mine always do. Good luck.
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