Have any of you got varicose veins and/spider veins that have been linked to your lupus or a form of vasculitis?

Have any of you got varicose veins and/spider veins that have been linked to your lupus or a form of vasculitis?

I have had varicose veins since about 17 years of age. From 16 onwards I never showed my legs off. I did A-levels at school and wore thick tights and knee length skirts in the winter and long floaty skirts in the summer / all to cover up my legs. When I worked in a restaurant from the age of 18 - 22 they would be so painful, despite wearing sensible shoes and support tights, under my trousers, I would often go home and cry and spend the evening with them propped up. Obviously I have hidden my legs ever since. So the Sun sensitivity and hiding my legs from the sun wasn't an issue for me. I only used to wear shorter clothes when abroad - where no one knew me so I didn't care what they thought of my legs. Obviously all that has stopped now with the sun. Anyway, 3 children later and my legs are terrible for a 42 year old. The thread veins are considerable. The varicose veins bulge. If I bruise them the mark never quite goes. They get itchy. The skin feels so tight over them. I have suffered venous eczema too and scratched and made my legs bleed, on numerous occasions, although as my lupus has become more controlled on hydroxy and 3g MMF, so has the itching. Has anyone had VV or spider veins linked to their lupus or a form of vasculitis? Such as cutaneous vasculitis or lupus vasculitis for example. Excuse the photo it's not the best but lighting is difficult. Wanted to give you an idea of what mine look like. There is just so much to learn about lupus and there may be no link. Just curious.

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  • Hi I too have had varicose veins for years I am now 47 -at 18 yrs I had them injected and then at 30 I had them stripped from both legs as the pain in my legs was unbearable I was a nurse and I too would cry when I got home with leg pains that nothing helped - the leg pains I get now at night is very similar to the leg pain I use to get - the varicose veins have also come back in both legs ! in answer to your question I'm sorry I don't know if there is a link and I will be interested if anyone else knows - best wishes πŸ˜€

  • Thanks for your reply. I have seen the GP about them on various occasions, but didn't take it any further, as my mum has had them all her adult life, but from pregnancy really, rather then me getting them late teens and didn't have children until I was 29 years old, so different causes I suspect. Anyway, mum's had her stripped 3 times? I think. Hers have always come back and worse. So I have deliberately avoided surgery. Plus in 2013 I needed a hip operation and then we discussed having that done on my left hip too, so when the GP mentioned surgery after that, i just couldn't face more operations. Is that cowardly of me? Now due to my lupus diagnosis, I am interested in the cause of my veins and now the hundreds of spider veins. Let's see if anyone comes up with an informative answer. Wendy

  • Hi Wendy, I also have terrible V/veins on my right leg. They started to develop when I was pregnant aged 25, I'm now 62. I also do not show my legs of, as they are horrendous now. They swell & give me pain etc. It's crossed my mind if it's a vasculitis thing because I'm getting more & more spider veins on that leg. I see my rheumatologist in march & shall ask him. Sorry I've not got any answers for you, but I'll be following your post with interest.

  • Thanks for your reply. Like you, I have a suspicion that it all might be linked, but I may be wrong. I am going to meet my MP and a Senior Officer from the local health board soon, after making a complaint about my lack of specialist care and am just trying to get a few things straight in my head. I don't want to say the wrong thing or be factually inaccurate. I don't want them to think I am a hypochondriac. Had enough of that before my diagnosis.

  • Great discussion, Wendy

    Am identifying with the way you're looking at this. To me, your caution makes sense. You're attitude is making me realise that I've felt my way through my first 6 years of the diagnosis & treatment process by never actually pressing Rheumatology to actually put labels on my collection of signs & symptoms. My feeling is that I've been vvvv lucky that I could get away with this...but I now realise it's mainly cause my treatments have progressively helped a lot...and also cause the diagnoses Rheumatology lists on every report they send me & my gp have satisfied my need for labels.

    For what it's worth my legs would probably have more of the signs you're describing & showing us had I been able to have children...bad varicose veins run in my family (due to ehlers danlos mainly) and my mother & middle sister have terrible varicose veins and both gave birth 4 x. My sister's came on after the first birth @ 18, and my mother's were early onset too.

    But instead I have relatively mild but ugly permanent varicose twisting swelling bulges + my legs & feet are patterned with all sorts of permanent discolouration & weird veination, including markings/scars from paroxysmal haematomas & what my medics call "vasculitic rashes" (these mainly affect places where tissues lie over bones: shins, front of leg, top of arches etc)

    Last week I saw the chief of lupus clinic who (re)diagnosed my lupus 6 years ago. She sees me every 18 months or so...in between I see a Reg or our lupus specialist nurse. Each time I see the chief, she makes comments that clarify my diagnosis, e.g. This time she volunteered that "mild vasculitis" is causing my version of all this stuff (also it's part of my simultaneous raynauds & erythromelalgia).

    I hope something in there is useful.

    πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

    PS I've always felt my early onset strangulated prolapsing haemorrhoids fit in with the vein issues in my legs. I think I've already told you the story of my horrendous haemorrhoidectomy experience in my v early 30s etc

  • Thank you! So I might be on the right wave length! I am taking notes with me to my appointment and within my notes is a list of my diagnosis along with medical issues and symptoms I think might need more attention. It's notes that have run to 4 x A4 typed notes. Summary format at start then more detailed explanation follows. I have listed my varicose veins, thread veins and haemorrhoids. When I list it all it is quite daunting! Xx

  • πŸ‘πŸ‘πŸ‘πŸ‘

    A really really good idea to have 1 page summary notes cover sheet! Absolutely: we need the full-length multi-sheet version ourselves (mine runs to 6 pages now, @ size 9 font 😏). My rheumatologist likes to keep a copy of the cover sheet. My feeling: more than 1 sheet of summary makes them think twice about reading anything πŸ˜‰

  • Yes, I know what you mean and I don't know how much time I will have with them yet. But I'm thinking this isn't a medical appt, more a formal compliant so I need to back up my issues? I also don't know if the "senior officer" is medically trained or a manager. Lots to think about. X

  • πŸ‘πŸ‘πŸ‘πŸ‘

    And just the work of prepping these notes helps glue them in the mind...buildsconfidence πŸ˜˜πŸ€

  • By the way, who conducts varicose vein procedures? Is it a General Surgeon? For some reason when my GP offered to send me to see someone re doing something about my veins I presumed she meant a general surgeon? But I think I need a Consultant Vascular Surgeon?

  • Vascular surgeon

  • Hi Wendy

    My legs look similar to yours and I may have the start of varicose veins. I do have spider veins and I Vasculitis but not had them linked together. That may change because I've been referred to general surgery for a vascular assessment because I have a leg wound that's healing slowly and had poor Doppler test results. I'm going on 28 Feb so may learn something that answers your great post. It's a whole new area of medicine for me!. Good luck for your appointment. Any news re MP and CCG meeting?. X

  • After the MPs secretary telling me in January that it would be end of Feb or early March for the meeting, I hadn't heard anything further. So I emailed and she said they still hadn't set a date. I have a lot of medical appts coming up now in March - 2 MRIs, GP, neurosurgeon, Dermy and Rheumy nurse. What are the chances of it clashing???? Plus I just want to get it over and done with. Fingers crossed I hear soon. Thanks misty14. x

  • Hi Wendy

    Knowing Sod's law , it's highly likely your CCG meeting will clash with all your other appointments!. It's horrid having it hanging over when you just want it done. Pity it's taken so long to organise!.

    My vascular surgery appointment has been delayed by a week , now 7 March , which isn't much I know and not like op's cancelled in hospital on the day which is apalling!. BUT, thanks to you guys on forum and my GP I feel more ready to tackle it!. It's the elephant in the room at the mo!. Good luck for all your appointments, keeps us busy being ill!. Look forward to updates. X

  • Good luck for 7th. Please let me know how you get on. X

  • Thank you so much Wendy. I will and good luck to you too. Keep fighting. X

  • Good luck Wendy for tomorrow and the rest of your busy week. Fingers tightly crossed for good outcomes. I'll let u know how Tuesday goes. Be strong. X

  • Thank you! Very kind of you to remember. Unfortunately when I phoned BUPA last week to confirm my authorisation number was the same as for my first medical appt they wouldn't fund this 2nd appointment and MRI. They consider it monitoring progress of a condition. We're not covered for that apparently. If the doctor had done the MRI at the first appointment it would have been considered diagnostic and therefore we'd be covered. So frustrating! And I feel let down and angry. That first appointment was a waste of time really as he could never give me a final answer without another scan. When I questioned BUPA about the decision, she said well you don't have a syrinx anyway, the letter says so. The radiologist reported a syrinx. But the neurosurgeon said I had two places where the spinal cord was enlarged and would need to be checked to see if it's growing. My concern was it was linked to lupus inflammation, as GP has told me before I have CNS involvement with my lupus. Might write a complaint to BUPA. Good luck on Tuesday. Let me know what happens. Wendy x

  • Oh Wendy

    I am so sorry about Bupa letting you down like that!. It's wicked you pay a lot in premiums and then these insurance companies do everything they can not to pay out!. Your right too to be concerned about the syrinx in view of your lupus symptoms!.What will you do now about it?. Good idea to complain to Bupa, they've been very misleading!.Good luck for your health board appointment and thanks for your good wishes. Will let u know. X

  • Hi Wendy How are you?. Just thought I'd tell you my vascular appointment was short and sweet!. A quick test of feet pulses with a machine and no problem with arteries declared!. GP surgery had overreacted!. They ought to do several dopplers and take an average, might have been spared a lot of angst!. Big relief it's over now and wound has healed!. Good luck for your health board appt, let me know how it goes. X

  • Thank you for letting me know! What a relief for you!!! These appointments can really play on our minds, never mind if they find something. I'm pleased your wound has healed too. Stay well. X

  • Thank you for your lovely reply Wendy. So agree!. You be as well as possible too. X

  • I've booked an appt with my favourite GP to ask about referral re veins. I'm don't really want to have an operation. I still think they just come back in other places, like my mums did and everyone else's it seems. But I think it's time I got advice on them. Thank you all. Will keep you posted. x

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