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Scleroderma & Raynaud's UK (SRUK)

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m-a-r-i-a-1 profile image
8 Replies

I don't know who to turn to with what's going on with my Raynaud's

I suffer on average 3 or 4 times a week maybe more with white fingers and toes. I work nights and have a repetitive job and I've been suffering with tennis elbow and I have a sense of tightness in my upper arm. some of my work colleagues say some nights I look drained and pale. I just feel like I'm getting no joy with my Dr and feel I'm on my own to sort myself out. I feel anxious and depressed as I'm not getting the help I need, so I joined Health Unlocked for some one to talk to and get some help and support

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m-a-r-i-a-1 profile image
m-a-r-i-a-1
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8 Replies

Hello Maria. Well done for coming here and posting. I have a complicated mix so not sure I can help. I had tennis elbow too and it's painful. I later went in to develop Rheumatoid Arthritis and that feel very similar only in multiple joints - usually symetrical - and more like fracture pain.

With the tennis elbow I got complete relief by seeing the physiotherapist (GP referred me) who massaged the arm very hard going right into the muscles and kneading out the lumps. It was excruciating but it completely sorted out my tennis elbow. She recommended that I empty a roll on deoderent and use this to massage my arm with or ask my husband to do this daily. I did carry on for a few weeks and then it eased.

If you are getting a repetitive strain injury like this because of your work then perhaps you should ask if the company's occupational health can access some physiotherapy for you if your GP isn't helping? Also they may be able to provide equipment that makes it much easier and less strain on your joints - especially if you tell them you have Raynauds/ circulation issues too.

I hope others come on soon to offer more advice and support.

Twitchy

thpoPe17 profile image
thpoPe17

Best go back to your GP or find another. I know that's easier said than done. For me I was diagnosed with Raynauds but turned out to be something else.

Working with it must be difficult and finding another job could help. Tell your GP aswell about your depression?

Sorry I can't be of more practical help but at least there is this site to share stuff

marilynmcl profile image
marilynmcl in reply to thpoPe17

I may be completely wrong here but I believe you may be suffering from depression too. I agree with the other replies to you on here with going back to your doctor and changing the doctor if he doesn't get you help with all that you are going through now. Don't give up, you are not alone...take care pet. Wishing you better days. x

Typicalmommy profile image
Typicalmommy

Hi hunny I too had the same problem doctor told me it was raynaurds and basically just to get on with it I knew there was something else so I changed doctors luckly for me my new doctor knew straight away I had got systemic scleraderma as well as she had seen it before my advice is to get a second opinion hope this helps keep trying and keep us posted xxx

zenabb profile image
zenabb

if you have Raynaud's your blood does not circulate properly and keep you nice and pink. So your colouring changes. Sometimes you will look pale and sometimes red, but it's nothing to worry about, its a subject of laughter in my family. You should ask your GP to refer you to a specialist, a rheumatologist to have your questions answered and proper treatment.

kel55 profile image
kel55

I'm starting to fall in to the trap of of this becoming a mission in life and that is to educate people regarding Raynauds Phenomenon? There a lot of half truths and old wives tales out there but the truth is still out there you just have to find it.

Let's start with vascular dilators and constrictors: over the counter cold cures are vascular constrictors it is how they work, so those of us who have problems with any type of blood flow should stay away, they also increase blood pressure! Nitrates are vascular dilators, canabis while smoking it is a vascular dilator but when you stop it becomes a vascular constrictor, opioids are dilators, most if not all designer drugs are constrictors and cocane is a super no no!

On a simplistic level calcium ions constrict and nitrate ions dilate, therefore we take calcium channel blockers, potassium helps nitrate intake so we take the likes of niccorandil. Viagra, monimill etc are different nitrates (mono, di or tri nitrate). Beta blockers are constrictors! which is why we should never take them.

Ok so you've got a cold and you take the likes of night nurse and your creating your own problems.

Then there's CHANGE change in temp or emotion or as their finding out change in hormones (particularly in females) we men don't have that problem. Unfortunately I'm on the extreme scale and this affects all my organs especially around my heart, it is now being realised that about 40% of people with chest pain haven't got a heart problem as such but a vascular constriction problem?

We need to find out these things for ourselves because big business is just out for itself and money, so they are not going to tell you!

Like I keep saying, don't trust me and what I'm saying! try googling what is Raynauds! Even the societies are starting to change what it is, re read their blurb.

Kel

Shift work at night is generally a bad situation for anyone but much worse for someone who has a chronic condition. GP sounds unsympathetic. Mine isn't too great either but they don't know how bad this condition can get, they are generalists.

fraxinus profile image
fraxinus

Hello Maria, I have reynards get chillblains. Think it really helps to make sure you get plenty of fat, protein and carbs (most important), in your diet and warm foods such as chilly, ginger and garlic. Lentils, nuts and oils (not cooked) are good and vit b from marmite (I'm a veggie tho so may not relevant to you). Also don't drink too much liquid with food, and avoid too much refined sugar etc. I also think its a bit emotional and relaxing in silence is important even if you only have 5 mins! and have plenty of enjoyment wherever :) takes your focus of the pain as there is always something worthwhile anywhere :)

Hope any of this may help, I know how you feel tho as alone is how I often feel with it but have learnt to live with it most the time now, sounds like your stressed try taking up a new hobby or new job not nights! or learn something new / socialize with new people?

Good luck xx

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