I've been diagnosed with Raynauds for three years now and each winter is just horrible. I have other auto-immune illness too but I wondered if someone here might be able to relate to what's going on.
I am meant to take 20mg modified release nifedipine a day (along with 300mg lyrica and 60mg clexane injections for the other bits). I'm currently feel like the pressure in my body is huge and really constricted around the neck area with some pain (mild). Checked my blood pressure and its 101/72 which appears to be normal but what is strange is that my pulse is usually between 90-120bpm yet at the moment its 72 and beating really hard. My insides, especially my head feels horrible, yet it's so hard to describe. If I don't take my raynauds medication I have what can only be described as a TIA (last one on Christmas day ). Prior to being on the Nifedipine I was having TIA symptoms once every couple of days after a larger stroke event a few years back.
Now that the weather is getting colder things are getting much worse. Regardless of room temperature my body still seems to react badly. Come 11pm to midnight my body literally feels like its pulsing and I can't get any sleep no matter how tired I am until 5-6 in the morning. I lowered my Raynauds meds to just 10mg just in case it was 'too much' but it's not made a difference.
Oh and on a side note, I've been getting a lot of bruising in my lower calves, I now wear compression things during the day.
Any advice, help, similar stories would be much appreciated.
Hope you're all wrapped up warm. x
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medsoph
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Hi. Im new on this site. And am trying to find answers myself. Just want to send u a warm hug and best wishes. Im sure u will find others here that will be able to offer u some ideas and helpful hints and answers. God bless.
Hi, sad to hear you are suffering so much and wanted to offer you some words of support. I was wondering if you have spoken to your GP or Consultant about the symptoms you are experiencing as they are possibly caused by your various medications working against one another. Have you suffered with this since you began taking Nifedipine?
I appreciate how dreadful this is making you feel (although I have never experienced it myself) so I urge you to seek medical advise as soon as possible.
Thank you so much Sally, it's so kind of you to repspond. As I've mentioined in the other comments I'll see if my GP will talk over the Nifedipine with them but .. I know it sounds odd but they see my case as odd and unique. My GP often says 'well what does the Lupus specialist say about this?' and I really think no one knows whats going on. It always gives me hope when others here say 'oh I've had that' or just send a hug, it means a lot and puts my mind at rest. It's only flared up now the weather has turned even colder and the air pressure is up, so I'm not sure if the meds are fighing or not :/. Either way I'll be sure to look into all options.
Could I ask if you have tried any other "blood pressure" medication (which is what Nifedipine is normally used for) ? I was originally on Nif. but it didn't suit me, so I'm now on something called Losartan. There are several other blood pressure medicines out there that I'm sure are available for Raynauds.
Please, as someone else has already mentioned, go and speak to your GP (or specialist if you have one) and speak to them about these issues. They are the only people qualified to give you any real advice and assistance. Do not feel that this is not something your GP/specialist will not be happy about - we all react differently to different drugs - and they need to know how you are (not) coping with your current situation.
*HUGS* right back to you! Thank you for responding. I was only given Nifedipine for the Raynauds, my blood pressure has always been on the low side anyway was a little unsure whether the side effect of this lowering it more would be an issue. They check it often at the Lupus Centre and it seems to be ok.
I'll make sure I talk through my options with the GP next time I'm there.
Hi Medsoph, you need to talk to your GP and Consultant. There are other medications other than Nifedipine to control your Raynaud's, so it's important that you change it to something similar.
The symptoms you describe sound like a classic case of the Nifedipine causing a reaction. This is not unusual, but needs to be addressed asap.
The rapid pulse and headaches are probably caused due to this particular medication.
The bruising is caused as part of the Raynaud's and is unfortunately part and parcel of the disease. Hope this helps. Take care and keep warm.
Firstly thank you so much for taking the time to respond, I really really appreciate it.
The rapid pulse and headaches started about a year before starting on the Nifedipine, just at the time I had my first 'functional stroke'. If I don't take it I risk having another attack. The weird thing is that, after attacks I have loss of mobility in my legs. As a test a day later, I took a dose of non-modified release Nifedipine and the legs were working again. It also seemed to be our coldest night so far with high air pressure. I don't understand anatomy properly but clearly some signals or something are getting lost. I think the doctors will tell me that's all in my brain but I've gone as long as 2months without those legs working. Luckily not this time..
I will go to the GP and ask about alternative medications.
And thank you so much for mentioning the bruises, that's a relief.
I take Amlodipine instead of Nifedipine for the Raynaud's and Headaches. I take 10mg Amlodipine each night (at night to counteract the faatigue it might cause) and I get no headaches, change the dose to 5mg and back come the headaches. I tried Nifedipine many years ago and that just made the headaches worse. In the last couple of years the Raynaud's has resolved itself!! woohoo!! but I have found that if I let myself get cold I get very numb fingers and my Doc says that is the Raynaud's lurking in the background. It is not good to be getting TIA's as often as you say, but I do have to say that when I was younger (I am almost 71 now) those 'neurological' things bothered more than they do these days.
Thanks Judy, yeah certainly a lot of neurological things going on. It's like I'm constantly trying to piece together a puzzle that I don't have the pieces for and its just so frustrating! I want to get better, go back to work and ..well, i'm nearly 30 and dependent on my parents from the age of 25 pretty much. I just don't know what to do and when winter comes it gets 10 times worse. *sigh*
I took nifedipine for a couple of years but the side effects really took their toll. All these meds from pharmaceutical companies are full of nasty chemicals. I'd rather have a warm bath & take Ginkgo biloba @ magnesium. I'm so much looking forward to the warmer weather so I can get out of wearing my mountain walking clothing each & every day.
Thanks for your reply Connie! Yeah I agree, the chemicals are nasty but I don't have much choice. I tried Ginkgo but it really didn't seem to do anything. I can't wait for the warm weather, honestly, it will be such a relief to feel warm sun on my skin.
It's such a nuisance of a condition. Ginkgo isn't a great replacement but my reaction to nifedipine wasn't doing me any favours. Sending you best wishes
Just thinking about the aspects of your problems and the fact of your age and had a thought today which I hope won't offend you. Panic attacks can be a very debilitating and frightening aspect of chronic disease. As I pointed out to you, I have been around for a fair number of years now!! and in fact have had Scleroderma since I was 22 and actually probably younger than that. I have never had a panic attack but in all my dealings over the years with others who have chronic disease I have come across quite a few symptoms which in the end have been put down to Panic. I asked you not to be offended because I am aware that nobody wants to be labelled a 'nutter' or worse, but you will probably agree that this is a very stressful time for you. If your GP is worth the money you have to pay him or her for advice then you should be able to get a sympathetic hearing if you just take courage and talk about what is happening.
Being chronically ill is a HUGE adjustment for anybody to accept and trying to deal with it on your own is probably futile.
I am not suggesting you go for the medication route, I have a very sceptical view of some of the modern medications for stress related illnesses, but if you can find somebody who knows what they are doing to talk to you might find it helps.
Big hugs and best wishes to you in your search for a happier and more fulfilling life.
You're so sweet for coming back to me again and of course I'm not offended. I know that all this drama has had an impact on my emotional/mental state and nothing such as Anxiety or panic attacks can ever be ruled out. However, prior to the onset of my very first 'functional stroke' I was very very ill with widespread Endometriosis which caused crippling pain, inability to eat and a number of other things. When this was in full swing I used to have severe panic attacks (because the endo was on my bowel causing issues yet it was invisible to scans so drs didn't know it was there.) They're nothing like what I have now but that's not to say that there can't be variants. However.. here's a link to some things it causes, might make it a little clearer: medsoph.blogspot.co.uk/p/bl....
I will really make sure to visit the GP again because I can't keep going like this. I can't get more than a couple of hours sleep a day and .. urgh!
Thanks for your reply. It is comforting to know that you are educating yourself about what is happening to you, even if you don't get far at least you are learning. I have met some people who either don't want to know or haven't got the resources to help themselves and that is very frustrating. At the moment I have one friend who we see regularly who is very disabled by what must be a stroke of some sort and she refuses to go to hospital. The police have picked her up driving erratically and because she can't make intelligible speech they thought she was drunk so took her home and discovered from her family that she wsn't drunk but they have taken her driving licence away and now her life is hell. Partly because she is stubborn!! Not your problem I know but it is frustrating to think that people have all this information available on the net if only they will make use of it.
Good on you for using the resources that are out there and I sincerely hope you get some relief soon.
Love the Harry Potter quote, that says it all really doesn't it.
It's a very dangerous business, looking stuff up on the internet. It really comes down to the responsibility of the patient to weigh up so many points of view. Many, many people will look up one thing and it will be the worst case scenario and ... yeah not good! Information only has value at its source and there are so many insta-bad things relating to looking up problems. My searches always resulted in MS indications.. yet its apparent that I don't have it. Waaay more complicated matter so everything has to be taken with a pinch of salt. All angles and perspectives etc, and also the fact that not so long ago there were terrible things going on in the medical professions and many unknown illnesses.. just because it can't be labled doesn't mean it doesn't exist.
I'm so sorry about your friend, that's awful. We stopped going to the hospital after the second major attack as the treatment was just so terrible. Now we just wait it out and hope for the best if and when they happen.
Its so very nice to have a community like this that can offer some reassurance and kindness, I'm very lucky for the responses I've recieved lately - I'm very grateful :).
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). Prior to being on the Nifedipine I was having TIA symptoms once every couple of days after a larger stroke event a few years back. 
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