Do I have Raynauds?

[2SWD]

Hi everyone,

This is my first post here and I am hoping all you knowledgeable folk can help me decide ‘Next Steps’.

I am a 61 yo female living in Hampshire & have suffered joint pain my entire life! As a child Drs said it was ‘growing pains’ in 1987 it was decided I had ‘Hypermobility Syndrome’. The pain I suffer can be in any of my main joints and is accompanied with severe stiffness, especially in the morning & whenever I have sat in one place too long - I have to keep moving otherwise I seem to seize up. This pain has always been worse whenever there is heavy rain or a dew in the mornings. I did have a few years respite when in my 30/40’s but back with a vengeance now.

Formal investigations (MRI, blood tests etc) have never revealed any functional issue with my joints or arthritis (other than a Frozen Shoulder) however, in 2016 I was diagnosed with small fibre neuropathy (stocking & glove) by Professor Anand (Imperial College London) which has now progressed into full peripheral neuropathy so always struggle with pins & needles & fasciculations. I was on Pregabalin for some time but struggled to find a dose that dealt with my discomfort but still enable me to use my brain so gradually stopped using it. I took up running, which helped me mentally & physically.

Unfortunately in Dec 22 I was struck with sciatica type pain in lower back, buttocks legs & feet and could no longer run. These symptoms have been investigated by spinal, vascular and neurology specialists and eventually ended up with a Consultant Rheumatologist at the beginning of this year, following abnormal blood test indicating scleroderma. This Consultant carried out lots more tests and confirmed I have antibodies associated with diffuse scleroderma but he didn’t think I had the disease, because I didn’t have enough symptoms other than the joint pain/neuropathy. When I asked what else he would expect to see he said, Raynauds as a minimum and swallowing issues. I did point out in my medical history that I have had swallowing problems with Globus diagnosed in 2015 (often feels like something stuck in my throat) & now take Lansoprazole every day. I have a fair history of gastro problems too including GERD, Duodenitis & Laryngopharangeal reflux.

My sister has scleroderma with Raynaud's but does not suffer the joint pain I do. She does have typical Raynauds presentation where her fingers go very white, and blue etc. I told Consultant I didn’t have this but do suffer with very very cold hands & feet. At this point I felt he was being very dismissive of me. These have all been private appointments through my Private Medical Health Insurance.

Since I last saw Consultant, I am now wondering if I do have a form of Raynauds because my hands/feet do go very pale (not white like my sister) but my biggest problem is where my finger tips go very prune like and are extremely painful (burning sensation) - these are new symptoms. No idea what my feet do as it is very tricky to take pics, but they do really hurt (sitting & walking) & the undersides of my toes do seem permanently pale if I hold feet up to a mirror. I have added a photo compilation with some pics of my hands & feet.

I was expecting a follow up Cosultation to come through in Jul/Aug as I was prescribed a low dose of Hydroxychloroquine, which initially did seem to help. Nothing has come through yet so wasn’t sure whether I should contact Consultant to say my symptoms have changed? I am a little reluctant due to how he made me feel, but I am really struggling & it isn’t even that cold yet! Only time I was symptom free was when I spent 2 weeks in Cyprus in June!

Other medical diagnosis which may be of interest include:

Atrial Fibrillation- had successful Cryogenic Ablation on in summer 2022. Discharged from Cardiology in Jan.23

Post Viral Fatigue Syndrome - 2000 - assumed due to undiagnosed/untreated Glandular Fever.

Apologies for very long post but if nothing else, writing this down has been cathartic.

[OldTed60]

Hi there. Apart from the atrial fibrillation I have had all that you describe diagnosed (hypermobile spectrum, SFN etc) plus Sjogren’s, Hypothyroidism and Systemic Sclerosis. Looking at your hand and feet photos I would say this looks like my own secondary Raynauds in earlier stages. Now it’s more apparent and quite severe but I’ve had it for about 12 years and I too am 61.

I’ve never been diagnosed with ME - rather I was diagnosed originally with Hypothyroid - then RA and then Raynauds, Sicca, SFN - now also Erythromelalgia, Gastroparesis, SIBO and slow transit bowel - recently got a stoma. I carry a rare diffuse antibody but so far my systemic sclerosis has mostly affected my gut rather than lungs, heart or kidneys or skin. I’ve tried all the disease modifiers over the years and been on mycophenolate for 4 and half years, now about to start Rituximab tomorrow as Mycophenolate isn’t being well absorbed anymore. I also get one day a month of iloprost for my Raynaud’s.

I’m not sure if this helps you in anyway but main message is that yes that looks like early stage Raynaud’s to me. HSD/ EDS can cause Raynaud’s too though and main thing is that you’ll know what to look out for with your sister having SSc but early treatments such as Hydroxichloraquine can work to stabilise it well I believe. Also bear in mind that scleroderma can present differently in us hypermobile folk and this seems to be a good thing re skin tightening - although we do have more musculoskeletal symptoms eg chronic pain so that’s the downside 🤷🏼‍♀️😊🤞🏻

[2SWD in reply to OldTed60]

Thank you so much for replying and gosh you have certainly gone through the mill! I know I shouldn’t complain as there are people much worse off than me! I always think the not knowing what something is makes it worse - when you know or can put a label to symptoms you are experiencing, it makes it easier to explain to family/employers etc. why you are having an ‘off day’ & can build up coping mechanisms.

My GP thought the Hypermobolity was the main cause of my joint pain when I was in my 20’s and he was also convinced that was the reason all 3 of my children were born prematurely. I have no idea if that is a general connection but I do know that I am light years away from the flexibility that I use to have - almost the exact opposite now!

I have often felt that people think I am making stuff up as I do seem to have had some weird & wonderful things going on over the years. Another super strange diagnosis I have had is ‘sudden startle syndrome’ this is where an unexpected loud noise will make me jump a mile - this can be quite amusing but also tiresome!

Sorry - going a bit off topic, but thank you for your feedback re: hands & feet. My sister also thinks I should go back to Consultant so I need to pull on my ‘Big Girl Pants’ and get a follow up appointment.

I am pleased to say that my sister doesn’t appear to have have any major issues with SSc - her lung capacity is reduced but nothing too serious - she has had regular check-ups now for well over a decade & Hospital have recently told her that they don’t think she will deteriorate any further. Her main problem is the Raynauds which she copes with very well.

Will let you know how I get on and I wish you well with your new treatment.

[OldTed60 in reply to 2SWD]

Yes it’s a huge relief to put a name to it all officially as you say. Being able to come to terms and get taken seriously by medics, friends and family means a lot.

For me I was only diagnosed as hypermobile last year by the scleroderma professor I saw privately at Royal Free, as an incidental finding, because it affects my skin a lot. I guess I knew already because physios have told me but everytime I mentioned to rheumatologists they ignored this so I gave up. My late mum had the same plus what I think was Lupus but wasn’t proactive in seeing doctors - just put up with a lot of terrible health issues and lived her life in fast lane until she dropped suddenly and prematurely.

Gosh that’s really lucky for your sister not having scleroderma badly. It’s a pretty foul disease for many of us but guess it depends on the type (antibody) and spectrum of severity like any condition. I admit I never think about the hypermobile because, now in my 60s, it’s largely historic and seems less of a worry in general than any of my autoimmune diseases. I’ve never been the athletic type - more uncoordinated/ clumsy and very jumpy and hypersensitive to noises, bright lights and chemicals - terribly allergic to random things. But autoimmune diseases have shaped my life as the hormones fluctuated and I lost my hair as a kid and adult had hidradenitis suppurativa from teens to late 30s - all recognised autoimmune stuff.

Anyway yes to you getting your big girl pants on and sorting all this out! Best of luck 😊🤞🏻xx

[Clangerscat]

Hi 2SWD, it’s a bit of a mine field getting a diagnosis for this disease isn’t it ? Don’t let anyone make you feel as if you are being a nuisance or making things up! We know when things aren’t right with our bodies and you just have to keep telling your doctors your symptoms. Maybe you would have better luck if you could get an appointment with a scleroderma specialist? Good luck and keep pushing.

[DJK99]

Hello.

I've had severe raynauds since I was early teens, and you might be able to see my photo somewhere on the SRUK website and my interview. I'm wearing a large aquamarine ring.

Hope ok to ask, but do you drink at least 2.5litres of water a day? And have a very healthy diet ie lots of veg and fruit etc? Dehydration can show up as pushing your skin down hard and waiting for the blood to flow back through. If you're not cold, it should pop up straight away. Dehydration makes our blood thicker and this is why a lot of those who don't drink water enough, or have conditions such as Sjogrens (as I do, amongst many others including lupus and severe raynauds) have to drink a lot of water in front of the phlebotomist/nurse, until the blood decides to flow into the syringe, as too thick otherwise (although there are other reasons). Your last photo looks a bit like you're dehydrated as the skin is staying flat. I can't really see any Raynauds on your pics.

You'll know if it's Raynauds as you get a strong white area (usually the tips of your fingers) with no blood at all in it, and then after you warm your hands up ie in warm water, or swinging your arms around like helicopters etc, it will go blue, then red - I think that's the right order! I've been on Nifedipine for years now and it's changed my life! I had no blood in my fingers, or feet in the winter for decades and it was just awful... constantly wearing thick skiing gloves and hard warmers and thick woollen socks and thick boots.. not that it helped my feet.. was like walking on bare bones some nights on way home from work.. and couldn't feel the keys in my handbag to open the door.. and blistering from I guess chilblains.

Have you read up on the SRUK website and seen the photos too? It will guide you.. but yes, taking photos and then showing your clinicians or GP will give you the answer you need.. or a pharmacist at your local Boots or pharmacy, if you can't get a GP appt!

All the best, and do keep glugging the water... it gets rid of a myriad of health complaints.. (and can really help GERD!) most of the population are severely dehydrated, thinking 3 glasses of water and a cup of tea a day are enough - we need at least 8 large glasses... but, yes, you will need to get the loo more often.

D