Does anyone else have Raynaud's and photosensitivity too?

[caram78]

Hi ya,

Last year I was diagnosed with secondary Raynaud's phenomenon which I had never heard of, it took me a while to get used to coping with it and just recently I have also been diagnosed with a photosensitive skin condition and some kind of connective tissue disorder which my dermatologist thinks may be mixed connective tissue disease.

I am now struggling to cope with both of these conditions during the summer months because even using the prescribed sun block doesn't stop me from having a really tiring reaction to the sun for some reason.

Just interested to see if anyone else has been diagnosed with both of these conditions too and if so how to you cope.

Also I have been given no medication other than the sun block.

[Connie75]

Hi, I do have Raynauds & have experience of skin flare ups but no diagnosis. I make sure I have my vitamin D sunshine time very early in the morning before it gets too hot etc then I'm wearing sunglasses with at least spf50. I did a search and found the attached link, maybe Chou could contact aussielupie & ask her for an update? Australia & New Zealand seem to be years ahead of us when it comes to health (that's been my experience anyway). Good Luck!

healthunlocked.com/lupusuk/...

[EOLHPC]

Yes, amd am v much feeling for you. It's good you're in the diagnostic process, with mixed connective tissue disease being focused on

But, I'll just suggest you consider referral to a rheumatologist with considerable expertise in autoimmune conditions inc mixed connective tissue conditions (like lupus & sjogrens)

I'm in treatment for systemic lupus, sjogrens, simultaneous raynauds & erythromelalgia, with a typical mix of various other overlapping secondary multisystem conditions (gyn, eyes, oral, urological etc etc). Am in my early 60s, my lupus was diagnosed when I was tiny. I'm ehlers danlos type hypermobility and now rheumatology & immunology think I've had an early onset immunodeficiency all this time as well. I am v reactive generally, inc photosensitive & heat reactive.

lifestyle management has always been key to my management of all this..i've given virtually every complimentary & alternative therapy a good go over the years, and conscientiously stuck with anything that REALLY helped. BUT the heavy-duty prescrip meds i take for my diagnosed conditions are equally effective and valuable...the key is being sure the risks are well outweighed by the benefits

Hope you'll let us know how you get on

Wishing you all the v best🍀🌻

PS connie's link, above, takes you to another great HU forum. where you'll find lots of good people managing our kind of issues

[Queencara78 in reply to EOLHPC]

Hi ya, I have already been seen by a rheumatologist that was clearly not prepared to think outside of the box.

I have been getting worse each week since around this time last year, had only had 2 lots of bloods taken before the appointment with him and neither gavery a positive ANA result.

Although the second showed slightly decreased C3 but normal C4 so he wasn't remotely interested and made me feel like I was wasting his time!!

He wasn't even interested in the fact that I have Raynaud's phenomenon, which confused me as I was told by my dermatologist that I should have been referred to a rheumatologist as soon as the Raynaud's was diagnosed.

I had a skin biopsy because I have an odd lesion on my thigh but of the 5 conditions it was analysed for only 1 could be ruled out.

My muscles seem so achy at times that I struggle to even brush my hair, let alone lift my son, and the tiredness gets so much that a simple 10 minute walk to the local shops leads to the need for a lay down when I get home it's embarrassing to say the least.

So more bloods were taken and now apparently I have an elevated LDH level of over 400 but still no nothing really.

[EOLHPC in reply to Queencara78]

Hi queen. It's tough when you're seeing Drs who don't have considerable experience of autoimmune conditions like lupus, and when your blood results aren't clearly meeting the specific criteria for lupus diagnosis. There are plenty of patients being successfully treated for various versions of connective tissue autoimmune dysfunction...inc lupus, but my impression is that mainly they're being treated by these highly experienced Drs. And often these sort of sero neg diagnoses are called "provisional" for years...e.g. 7 yrs+, while the Dr closely monitors symptoms, blood results & response to prescription meds. If you want to know more, I suggest you visit the Lupus UK website and the Lupus UK HU forum, where there are patients who have many more years experience of the diagnostic process than I have...wishing you all the very best

[caram78 in reply to EOLHPC]

It is indeed, I do know that what the LDH being elevated does indicate is cellular or tissue damage, so how much damage needs to be caused before meds are brought into the equation? So scared of being disabled

[EOLHPC in reply to caram78]

Good question. And the answer is complicated...eg in my case, disability started in my mother's womb when I was exposed daily to the notorious artificial oestrogen DES which caused internal gyn birth defects...

some Drs have volunteered that they think this DES exposure also contributed to my version of infant onset lupus...then i had a childhood injury which mean I was further, but at first only slightly, disabled....but that was all in the '50s when steroids had only begun to be used in a relatively crude & experimental way to suppress autoinflammation...and today many experts feel this steroid treatment did so much collateral damage that maybe it was the cause of as much disability as the lupus itself....

It seems to me that all this is why most Drs are v cautious about prescribing powerful systemic lupus etc meds. The risk benefit ratio needs to be fully discussed and understood before undertaking treatment...

but meanwhile we can do everything possible to minimise autoinflammation via lifestyle management techniques: pacing our activities, anti inflammation diet, appropriate exercise, meditation eg mindfulness etc etc.

because my mother kept my infant onset lupus diagnosis a secret, I received no systemic lupus meds until my mid 50s....and my Drs tell me that lifestyle management has probably gone some way to limit the progression of the debilitation I was gradually experiencing without systemic lupus meds (of course, before re-diagnosis, I did get steroids during emergencies, and I always had loads of antibiotics & topical steroids but Drs never actually looked hard enough to connect up my dots and suspect an underlying autoimmune condition causing most of my health issues & debilitation)

As you can tell, this subject is close to my heart....I can go on & on

Thanks for starting a great discussion, caram, and good luck🍀👍

[Jabberwok]

Have you been referred to a Rheumatologist? You could also ask your GP to do an A.N.A blood test. It transpired after testing that I have Scleroderma along with my secondary Raynauds. My Raynauds is now more managable thanks to using Adalat Retard twice a day. About 6 months ago I started having a skin condition on my face diagnosed as Rosacea which responded to treatment along with a good sun block (Sunsense) for uva & uvb rays. Do push your GP for any necessary referrals as Connective Tissue conditions can go undiagnosed for years! I now take vitamin D supplements and wear a brimmed hat when outdoors.

[zzcat]

Hi,

Just to add something to the other advise you have gotten, as I too have the same diagnosis along with SLE, RA & APL. One thing that has made a major difference in my life was putting a solar block tint on my car windows. It is clear or tinted, your choice, and blocks 99% of the UV Rays. I had no idea how much trips in the car can add up during the week. It an even be done for totally clear on sunroof and windshields.

Good luck!

[mdnig]

I was diagnosed with Raynaud's fifteen years ago. My foot doctor told me to see a Rheumatologist which I did, last year I was tested for Lupus. The test came back positive for SLE and Discoid Lupus which affects the skin. My doctor prescribed Nifedipine for the Raynaud's it's a channel blocker to open up the tiny blood vessels in my fingers and toes. In the cold weather my toes and fingers will turn numb and go from white to red to blue. In hot weather my toes will turn red and itch like crazy, I have to soak them in cold water for relief. I feel for anybody with this condition.

Maybe you should be checked for Lupus. I was told Raynaud's isn't a disease but a symptom of something else going on in the body, now that I have Lupus, I have to deal with that every day. Hope this was helpful for you.

[simplyred]

Can i ask what type of reaction you get to the sun? I too have Raynauds, I was diagnosed a couple of years ago. For years I have had flare ups of severe prickly heat, mainly when I go abroad, but this year I haven't been abroad and my arms are covered in blisters that itch like mad! I'm just interested to know whether it's all connected.

[caram78 in reply to simplyred]

Hi ya,

Sometimes I get a butterfly type of rash across my nose and cheeks and other times my face starts to swell also across the cheeks. The majority of the time I just become extremely tired and lightheaded with a feeling that I my faint or even have a seizure. When it is really hot I develop redness over any skin that's exposed, and usually suffer worse the following day with fatigue and stiffness of my right arm for some reason but never had any blister reaction. Have you seen a dermatologist?

[Zara-LouiseD]

I have Raynauds and also a UV allergy, so if I am in strong sunshine and forget to use sunblock, I get terrible rashes that itch like crazy. It doesn't happen so much in the UK as the sun isn't generally strong enough. I get very hot itchy red feet with small spots if I get too hot on holiday and have to sit with my feet in cold water to stop the horrendous burning sensation! I'm pretty sure I have Lupus, but my gp said bloods were negative and they won't entertain it. I took photos of all the rashes that I got whilst I was abroad and forgot to put sunblock in my legs one day, and the areas where sunblock didn't make a difference but they don't care - they just look at me like I'm a hyperchondriac......They do agree that I have numerous immune system reactions as I have multiple allergies. I also can't cope with sunlight and my eyes - I wear sunglasses in the car even on grey days otherwise my eyes hurt.

[Kfmclay]

Yes! For the photosensitivity sun block makes it worse. I wear long sleeved and cover everything when I go out.