Raynauds

[Lisa_Lovatt]

i have raynauds and i was just wondering what i can't take with having it as the other day i found out having things with caffeine in can make it worse that's what i read anyway and i today i brought and energy drink that contains high caffeine in as i didn't realise it had any in until i finished the drink. I seem to get more pain in my legs but the past few days i have been getting alot of pain in my wrists arms feet and my legs and sometimes my fingers. I'm also on Nifedifine 5mg does anyone know how many times a day it should be taken as I've forgot and ii lost the information leaflet.Thanks for any replies.

[Hidden]

I was taking Nifedipine 10mg twice a day, it made the symptoms 100 times worse. Some people take 20mg once a day, some 20mg twice a day. Depends on your doctor.... etc.. so I've stopped taking the 2 x 10mg a day - will give myself a break for a few weeks and try it again.

[Lisa_Lovatt in reply to Hidden]

Oh right that's not good then I'm on 5mg don't think its working at the moment tho i will have to give it time tho as I've only just started taking it again now it's coming upto winter. Hope your medication works for you.

[poole_odyssey]

I gave up caffine a few months ago and it has defintaley helped with the Raynauds. At the moment I am on 30mg of nifedipine 2 a day and that is the maximum allowed. Dr said I couldif wanted take 20mg three times a day. During the summer I take beither 5mg or 10mg twice a day . I also have GTN patches for the winter when it get very cold. The only side effect I ever had was a headache which passed after a few days of taking. There are other alternatives to nifedipine out there.

[Lisa_Lovatt in reply to poole_odyssey]

Oh right did you i have now cause i didn't no it could make the raynauds worse but yesterday i brought and energy drink without realising it had high caffeine content in it. Hope there helping you with the pain and that all right then. Yeah I've heard that I've only been on nifediphine so far.

[tinaparkii in reply to poole_odyssey]

Sorry just been reading most of the questions and answers on ere to find out more about raynauds. As I find this pain in my wrist/arm unbareable. So I try to find anyone or what anyone more is/are taking to help there pain. Just wondering what GTN patches are. Keep well. Hope every1 keep well and warm. X

[eembee1 in reply to poole_odyssey]

Hello Poole_odyssey🙂,

I guess we all can have different reactions to these medication, i had to stop nifedipine due to headaches and lightheadedness. On Sildenafil 50mg 3 times a day but stll have a bad ulcer....i suggested a GTN patch but my Drs were unwilling to prescribe it as they did not know what dosage to start with...what's the lowest dosage one can start off with?

Thank you,

Embee1

[zenabb]

I have decaffed tea and coffee and avoid fizzy drinks. I drink juices though but no pineapple juice as it does not go with nifedipine. Folow your doctor's instructions not the leaflet. I take 90 mg of nifedipine everyday but stop while I have Iloprost. I also reduce it when it hot like in the summer. Doctor's advice.

But Lisa you seem to have more than Raynaud's. Have you seen a rheumatologist?

[Lisa_Lovatt in reply to zenabb]

Does fizzy drinks make it worse as well then cause i normally take fizzy drinks but at the moment I'm taking oasis. Oh right i will keep that in mind then not to take pineapple juice. I've kind of forgot how often the doctor told me to take them that's why i was wondering. Oh right do i why's that? Nope i haven't been to see a rheumatologist

[zenabb in reply to Lisa_Lovatt]

I suggest that you see the GP again and ask to be referred to a rheumatologist who will be able to tell you if you really have primary Raynaud's or is secondary to something else.

[Lisa_Lovatt in reply to zenabb]

Yeah i will do but I'm sure it's primary because i don't think have anything else apart from raynauds but i have been experiencing more pain then normal and i don't normally get wrist pain either but seems i have been since the beginning of this week.

[jamesecoker]

Hi Lisa,

Wrist pain on my gosh that is something that causes a few problems for me. I take Nifidipine 3 times a day 20mg and I think it helps. I also take other things too. I take every day two teaspoons of Manuka honey 10+ and right this minute have just put some on a sore finger tip where a little ulcer is deciding to not mend itself!

Do you have Primary Raynauds or secondary which means through another condition like Scleroderma , hope you do not mind me asking. Mine is secondary through Scleroderma.

I have my coffees everyday but the pain has lessened in my feet since taking some steroids but also eating smaller meals. The theory around this is ones acid levels well mine are higher due to my antibodies not being balance so bigger meals raises the level which in-turn raises nerve pain! Thanks james

[Lisa_Lovatt in reply to jamesecoker]

Hiya, yeah I've had wrist pain for a couple of days now and been getting pains in my hands fingers and legs, also when i stretch my legs seem to always crack not sure if that has anything to do with raynauds or not though. Oh dear sounds not to good hope it goes soon for you.

I think mine is primary as i don't think i have anything else i only suffer with alot of bad headaches. and no i don't mind you asking.

That's good that the pain has lessened then. Ah right so you can only take small meals then i only like sometimes have 1 meal a day.

[jamesecoker]

Hi Lisa,

I do not want to concern you at all, not my intention but when I got diagnosed with Raynauds I too had these other symptoms your saying and I had this Scleroderma, I could be way wrong here but have you had other tests done? This wrist pain is immense like now typing it is painful. Yeah I dont know about cracking sound but I get knee lock which clicks so could be simliiar? I have noticed that their are so many different things that effect one and then doesn't effect another so dont take what I say as gospel. I dont want to be suspended on here as soon as I join:)))

These steroids are helping I think but this cold weather I think not. A hotter climate would be nice

Why you get so many bad headaches? Medical or you living life in the fast lane?

[Lisa_Lovatt in reply to jamesecoker]

Hiya james,

oh what symptoms are they you mean like the wrist pain and that, that i am getting. My wrist pain only started since Monday since then its been hurting same with my arms as well. Nope I've had no tests done i haven't been to the doctors about it. Oh dear that's not good then, ermm yeah i think it could be similar. Yeah everyone seems to get different things that affect them. I get mostly pain in my legs witch is annoying it keeps me awake at night.

That's good that there working then. No the cold weather wouldn't not looking forward to when i gets colder either.

I suffer with migraines I've had them since i was 16 and still get them now alot.

[jamesecoker]

Hi Lisa, sorry I popped out for Christmas shopping!!! Snap, I too am having problems with sleeping , it is a real pain in the ass, hence I am up now!!!

I have this painful ulcer and earlier I put some strong Manuka honey on to and it looks a bit better so after my bath I will put some more on there! As a child I suffered with bad ones, luckily not now that would finish me off!! I do get Labringitus once every few months which is a virus in the inner ear and that can make one dizzy, touch wood clear of that!!

I dont want to alarm you, normally my wrist pain is constant, might not be as bad and worse at other ties but it is always there, so do not want to put things in your head if not true:))

Whats the pain in your leg? is it like a cramping or nerve pain?

Thanks,

James

[Lisa_Lovatt]

Hiya, That's alright I have even started my Christmas shopping yet! Awwww, that's not good then. Yeah it sure is a real pain in the ass, especially when your really tired anyway. I'm still up to. Still got alot of pain in my legs feet and that.

Oh dear that's not good where has the ulcer come from or is it due to the raynauds. I hope it works for you as i know ulcers can be quite painful. Oh that doesn't sound very nice at all.

Oh right that's ok How long have you had wrist pain for then, I've had mine since the beginning of this week but i haven't seen no one about it having alot of pain this week with my legs wrist feet hands and now and again my arms and fingers. Only way i could find out is to maybe have tests or something

Well the pain feels like nerve pain and sometimes it feels like a tight pain I no a while ago when i was in Walsall think it was a year or so ago my legs got that painful and bad that i couldn't walk i ended up walking like a penguin on to a train lol..

[MikefromsouthNZ]

Hi Lisa,

I have secondary Raynaud's due to Fibromyalgia and this condition is very painful, almost like an Arthritis pain and I get this in my legs, thighs and knees but more intense in my neck, shoulders, and back but I also get this pain in the elbow and wrist of one arm .. I do also do the honey thing as well, plus I take a teaspoon full of pure honey each morning as it also works from the inside of us as well.. I also take high strength fish oil capsules(great for joints), a magnesium capsule(great for fatigue) and a high dose cranberry capsules(good for kidneys plus UTI's) too..

A good diet is essential to battle constant chronic pain, so I avoid alcohol and caffeine at all cost, plus any chocolate as it is a pain stimuli.. Wholesome foods plus fresh fruits and dark vegetables, wholemeal breads and avoid pre-packaged meals as they are full of salt(up to 30%) and not good in large quantities as it hardens our arteries so bad for Raynaud's...

For most pain I find moist heat works very well and I put hot wheat-bags painful joints and tendons. Another way to use moist heat is a long soak in a spa or deep bath as these help too.. But I put my frozen feet into a ThermoTex TTS Foot to slowly warm them plus I have another TTS Platinum(similar to a small lap-blanket) to put my cold fingers onto.. I swear by Thermotex products; this link might help explain more on how they work: thermotex.com/howworks.htm

I also found out that light exercise helps reduces pain, almost by half, plus light exercise increases our circulation.. I go for a swim each week and have been swimming since I attended a Living Well with Fibromyalgia course, as the Arthritis foundation run these courses so they definitely understand a lot about chronic pain..

[moimoi]

I was told that Nifedipine at 20mg a day not theraputic and now take 40mg which helps as the veins in my feet no longer cause pain. I have no side effects with this drug.

I do have chronic pain in my feet and legs which is worse when cold but this might be the MS. I try to keep walking and do as much as possible to keep the circulation working. I am unable to say if it helps the pain but physicologically it is good to be active.

[Thom55]

Hi you need to speak to your GP re the amount you take daily as this is different for everyone and yes caffeine isn't good try de cafe