weird raised big veins in feet and legs both

[Pol53]

has anyone else had weird raised veins in legs and feet ??

i went to gp yesterday saw yet a different doctor she hadn’t read any of my notes before arrival and it was after a phone call where I mentioned my veins they called me in to take a look- she made me go through telling her my history when I said I had recently been diagnosed with Pmr she gasped and said who has diagnosed you with this - to which I replied rhuematology referral she said I was too young to get this ( I’m 53) and usually isn’t diagnosed under 65 - usually I cannot see my veins at all and they had swollen up on the tops of my feet really raised thick and spongy feeling and large vein all the way up to knees on both legs I’m not gonna lie it has totally freaked me out - not only did she not know why this has happened but offered no test to see what it is !! Every time I go to this surgery I feel like it’s a total waste of time - I asked for a ck blood test as I had read about a condition called rhadbo only because I googled pictures that looked similar to my veins in my feet sigh - I

ended up pouring my heart out over my anxieties of taking all these meds my bp is still raised even with extra indapamide pill on top of my ramaprill - I can’t cope with this journey I feel like pred has ruined my life - yes I was in pain before - but this Barrage of side effects is worse and I don’t deal well with uncertainty I may as well come off my mirtazapine because I feel like I did before I was medicated for that - I’ve now got a chest infection green tasty cough joy when will it end

I meant to say - I discussed not taking the alendronic acid until I’d had a dexa scan ( she said there unfortunately is a long wait) she doesn’t advise it but told me it is my body and my decision !

i also raised my concerns about my statin (atorvastatin ) I asked if my dosage could be reduced to 20 mg from 40mg she said no that if I wanted to try stopping it that that was up to me but would not reduce my dose , I told her I would cut the pill in half to which she said nothing ! I have decided to stop both for now I’m overwhelmed with all these meds and after reading that my body needs some cholesterol I have decided just to follow instructions on things to avoid and to choose - I hate seeing different doctors having to go thru everything each time is exhausting and they never get to know you !

I feel like I’m on a merry go round and I want to get off !!!!!!!

[DorsetLady PMRGCAuk volunteer]

Sorry cannot help on the current issues, but have you tried raising legs when sitting or lying down - and maybe compression stockings to see if they help.

Could

Others will be along with their experiences and remedies… and as for GP.. well if she is querying diagnosis from the Rheumy then she needs to get back in her box… and do what she should be doing - finding out what’s causing your problem.

Hope your chest infection soon clears. 🌸

[PMRpro Ambassador]

Well I fear she is talking rubbish - the criterion for a PMR diagnosis for research purposes is over 50, which doesn't mean you can't have it younger but it is unusual, and the AVERAGE age of diagnosis is actually 72 but the incidence in over 75s is very high so it takes quite a few younger patients to bring the age down. There are misdiagnoses but most of them come from GPs - so she's no room to talk!

There are lots of reasons for prominent veins on the top of your feet and in your legs - and I can't find anything that suggests it happens in rhabdomyolysis which would cause other symptoms, it can cause swollen legs which may be mistaken for a DVT but you don't mention anything that suggest either. Do you have severe pain in your legs? Is your urine very dark and small volume? Do you feel weak and very unwell?

I think you probably need to see your usual doctor for your mental health care who may understand better where you are coming from. You could discuss the statin with them and maybe agree to try stopping it for a while and see if your symptoms improve - how long have you been on the statin and did the PMR symptoms appear soon after starting it? Have you access to a mental health team or service who could help you sort out how you feel?

Everyone feels as if they are on a whirlygig at first with PMR - it is all new and confusing and some doctors just throw pills at you to deal with possible expected adverse effects of pred - many of which never materialise!

[Pol53 in reply to PMRpro]

I felt like that too like it was a pointless appointment , unfortunately I don’t have a regular doctor there you see who you are given I did manage to see a physician regularly I have no support with my mental health despite 4 years of different pills

I started atorvastatin in May 22 and yes all my symptoms started at the same time exactly (I wasn’t partially as in tune with my body back then as I am now probably because I’d never been I’ll before or ever taken tablets for anything so I really did not consider the fact that it might be the statin causing my pain looking at my notes it was June 22 when I first reported neck and arm pain which is only a month after starting atorvastatin which they gave me as my cholesterol went to 6 whilst I was trying to keep my hbac1 low (35 in 22) (42 in 23) he said not enough fibre too much protein don’t be too afraid of carbs ( which I felt and still do were my enemy with the diabetes

Re the veins it was a hot day I had been pottering un the garden but nothing strenuous and not uniasually long on my feet they gone down since resting but still don’t look normal - no swelling around ankles or legs just the veins themselves and very bright and lumpy - plus they were pulsating sigh I guess it just freaked me out if it happens again I will go to a and e and I will tell them GP hasn’t got a clue so I’ve come here !

[DorsetLady PMRGCAuk volunteer in reply to Pol53]

If you were in garden, sure it’s not an allergic reaction…. Sounds a bit far fetched I know, but some plants can cause strange effects..

[Pol53 in reply to DorsetLady]

I didn’t think of anything like that I only have roses and a hydrangea and I didn’t see anything like a bite on me or any itching but who knows anything is possible if it doesn’t happen again I guess I’ll never know they have gone down but still don’t look my normal I’ve lost so much muscle my legs don’t feel like they belong to me anymore x

[PMRpro Ambassador in reply to Pol53]

The loss of a lot of muscle mass is concerning - and COULD be statin related. I asked about your urine?

[Pol53 in reply to PMRpro]

no noticeable changes in my urine - post menapause oct 2020 last period until first two covid jabs bled after both got sent fir hysteroscopy lining of womb too thick but no cancer I haven’t had covid jabs since

I was taking alendronic since 26/2 I haven’t taken ut this week and told her I won’t until dexa scan proves I need it

I also stopped the atorvastatin as I’m starting to think this is my cause of everything - I’m only guessing but I’ll see how I go without it

Thankyou fir the advice re the supplements too - I’ll speak to them about diabetic clinic I have mentioned it before but I guess until pred I was doing ok they have a clinic at my gps but I have never been invited to go I’m hoping that the dinasoar that used to run it has passed ut in to the one who was training to take it over because his answer will always be pills I’ll also take a look online to see if there are any others in the area - at this point I would change surgeries but I don’t drive and they are much further away and there’s no guarantee they are any better sorry if I miss things

[PMRpro Ambassador in reply to Pol53]

That's good if the urine is OK - makes rhabdo far less likely. Sounds as if you have calmed down a bit now - and that is good too. We are always around to let you rant and hear it - because that helps too - though not necessarily overnight. Look after yourself now.

[Stills in reply to Pol53]

Question, Covid jab caused post menopausal bleed? I have experienced this but didn’t related it to the Covid vaccine although all the other symptoms all started at that time. Interesting - all the scopey pokies came back negative and I’m still ok to take HRT. I linked the bleeds along with other new symptoms to autoimmune thyroiditis but inconclusive so far. Muscle pains in my arms and thighs continue as does an increase in existing joint pain from my rheumatic condition, I can’t yet link these to the bleeds as they are very erratic and insignificant but inconvenient. The things we have to put up with hey !

[PMRpro Ambassador in reply to Stills]

There are varying opinions on postmenopausal bleeds associated with the Covid jab but this fairly large study found no significant difference between the cohorts

sciencedirect.com/science/a...

[Stills in reply to PMRpro]

Thank you

[DorsetLady PMRGCAuk volunteer in reply to Pol53]

Hydrangeas and roses should be okay… apart from thorns on roses - I always seem to lose the battle there!

Good to hear they are improving somewhat…but keep up the water intake, 🌸

[PMRpro Ambassador in reply to Pol53]

I think you have identified the cause of the swollen veins - heat will often cause the effect, happens to me at times.

This isn't "medical advice" - but I would stop the statin for a while. Try the plant sterols, they can help a lot. One lady on the forum says she uses a fibre supplement very successfully (physillium husk - and LOTS of water!). Don't start the alendronic acid yet - you won't collapse in a heap and wait for a dexascan - at your age it is recommended practice. Are you menopausal yet?

The cholesterol is important if you are also diabetic but they also need to be a bit more helpful in discussing things with you. You really need a diabetes specialist - you are a complex patient and the average GP practice will be out of their depth, I know you don't want another consultant but a proper diabetes clinic will be far better for you.

[Pol53]

Thankyou both so much it does help to talk about it and I’m driving my youngest mad with it all she reminds me her degree is creative writing not phd lol 😂 wishing u both a lovely weekend x

[agingfeminist]

The advice is usually not to rush into stopping statins...how long have you been taking them? like many drugs (including pred) you need to taper...please go back to whoever prescribed the statins and discuss stopping them.

You have a lot going on here and you need a doctor who will listen to your concerns. A diabetes clinic as recommended by PMR pro sounds a great place to start. Just focus on that for the moment and step by step you will get back a feeling of some control...or at least a feeling that some medical professional is really listening.

Do keep in touch with everyone here...especially the WISE ONES.

[Pol53 in reply to agingfeminist]

I did discuss it at length she wouldn’t lower my dose told me that it was my body but she advised I keep taking them I told her I’d cut it in half or stop she’s said stop then see what happens , she refused 20mg ( I was on 40) chol was 4.2 - I had been on them since June 22 ( in July 22 I first went with my stiffness cramps and aches so no I won’t be taking this statin anymore as I believe it was the start of all my issues -anyway I did stop and it’s been a few weeks now my veins are looking normal and I have had no side effects thankfully - I’ve increased foods that lower my cholesterol and added a plant sterol I guess only time will tell until my next chol bloods if I am doing enough to keep it in a good place - I wish my pred was lower I’m currently on 8mg tapering 1mg a month

[Viveka]

This is a medium to long term strategy, not a short term fix, but have you done all the things that can improve overall health and wellbeing like improving diet and exercise? Not just reducing problematic stuff, but introducing healthy options. Lots of sound advice on these out there like Mosely and Zoe. See my recent post on reducing cholesterol through plant sterols and pre-diabetes through using a monitor to identify and reduce blood sugar hotspots.

[Pol53 in reply to Viveka]

Hi viveka sorry late reply

Yes I was diagnosed as diabetic in 2021 and up until I went on pred I wasn’t medicated and was doing ok with just food do my diabetes was controlled unfortunately pred sent everything out of control and now I have to take glicazide and metformin - I have me Moselys book but have to wait to come off the glicazide before trying the 8 week diet but I’m already trying out some of the recipes in prep such a sad week in regards to him great man

[Dcctrains]

Pol53,

I was diagnosed at 50. Therefore to say you are too young is probably incorrect. I wish you well.

[Twopies]

I had large veins pop up in my feet; also, couldn’t get my rings on…a first for me. Felt like you know what too. Doc took one look at my feet and said: “that’s the prednisone!” (Odd, because I’d been on it for so long.). Had physical and ekg, all perfect (of course). In a day or two it all settled down, leaving me befuddled as to what caused it. In my case, all I could tie it to was some weird reaction to something I ingested—I have a lot of allergies/ intolerances. Hope you get yours all sorted out.

[marionofnorwich]

I occasionally get very raised veins in my leg, especially my right leg for no apparent reason. It stays for w few days and then goes away again. I haver other symptoms which turn up and disappear. My gut feeling? Although I am well past menopause, I have a feeling that it is hormone related, not least the adrenal glands that control the sex hormones as well as cortisol. My cortisol tests show that they are not working properly yet, and a fibroid that was diagnosed twenty-three years ago when I was about 46 has grown by several centimetres, two in the last few months(I was told that it would shrink with menopause). Raised oestrogen and progesterone caused a softening of soft muscles such as ligaments and blood vessels so I am wondering if that is what is happening. Anyway, I have similar concerns with blood pressure and statins. All the blood pressure meds have either caused extreme swelling or have resulted in even higher blood pressure so I have stopped those for now. My blood pressure has dropped a bit (though still in 140s) and I have just restarted the statins. Sometimes I get a test via Thriva so that I can order the tests I want and keep my own records, mainly blood sugar, cholesterol, vitamin D, and inflammatory markers