Hi, I’ve had Raynauds for a few years, usually just affects my feet turning them numb and blue. I’ve been taking 2 x 10mg Nifedipine which helps somewhat, but I go through spells where my feet are very swollen and sore even to the slightest touch.
I take Amitriptyline for chronic migraines so was advised to increase dose to 100mg to see if this helped with the pain which it did.
But since Christmas my hands are now swelling up, especially my right hand. The fingertip on little finger is a dark reddish colour all the time and really sensitive to touch, and with my thumb and finger beside it, the knuckles are swelling out sideways so starting to look crooked, with hard skin and very sore too. Finding it difficult to do normal things now like hold the kettle properly as it’s sore and stiff when I try to hold things.
I’m also hypothyroid and on 100mg Levothyroxine, due next thyroid blood test in a few weeks.
Attached a photo but it doesn’t really show my hand properly, hope my description helps and interested to know if you think this is just another phase of Raynauds or something else? Thank you for your help, it’s much appreciated!
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Hi there, This is something to discuss with your GP or Consultant, but it could be a result of the increase of your amitriptyline. This is a drug that works on the central and peripheral nervous system and therefore large doses could well cause some of these symptoms you are describing . 100mg is a big dose. It is rare to prescribe it for pain relief above 75mg. You are on a dose that would more be used for depression, and as it is not a very effective anti depressant then it is not usually prescribed like that anymore. Your GP is the best person to know so have a discussion with them. Unexplained swelling always needs investigation because it can be caused by many things.
Hi LucyJean , thanks for your message. I was increased to 100mg Amitriptyline last summer when my migraines worsened, they also prescribed Topiramate which I'm now on 50mg per day. I wish I could say that they got rid of my migraines but at least I don't get as many now which is a good thing.
Then I had problems with swallowing and was choking on food, saw an ENT who said it's silent reflux and GP prescribed Omeprazole but I've held back taking something else when I've started having problems with my hands too.
So I'm hesitant contacting my GP again unless it's necessary as already feel like a pest. I thought I had my Raynauds under control, the Nifedipine helped take the edge off but my hands and feet still feel very cold but at least I could use them. So maybe I need a change in Raynauds medication at least.
Hi, I had a reaction to nifedipine & felodopine where my hands (& arms) swelled up. I had to change to a different med for my raynauds. I now take lacidipine and sildenafil. I wonder if the increase in amytriptiline has triggered this for you. Might be worth discussing with your doc? X
Hi Sosie , thanks for your message, think I need to contact GP and ask for a change in meds, at least for Raynauds and see if something else will help!
Hi, I've had Primary Raynaud's for nearly 20 years. 2 summers ago, 2019, I woke up with the same issue as you and totally out of the blue. It happenened when we had extremely hot weather. My GP said it was relaed to my Raynaud's, suggested gentle exercise and it did ease somewhat over time, but I continued to have a loss of ability in doing "tiny" things, like tablets, and holding things that required my hand to be opened wide. Last July my GP put me on Colchicine for inflammation in my back. After a few months I noticed that my hands were improving and now I am pretty much back to where I was. It's an unusual medicine to use for inflammation these days because most people can take NSAIDs. It's main use is gout but my GP said it coould be prescribed for acute inflammation and "Rheumatolgical" matters.I'd definitely telk to your GP about what's going on - I hope you quickly find something that helps. Take care and keep safe, N xx
You mentioned you have a Raynauds diagnosis but have you ever had blood tests for autoimmune disease? As you have also referred to swallowing problems and reflux, along with your swollen fingers and some skin stiffening, you ought to ask your GP about scleroderma / systemic sclerosis as these are some of the symptoms.
They could, however, be completely standalone issues but you ought to get this checked out. Bloods might then help to rule out or confirm, along with a proper clincal examination/assessment and referral to a rheumatologist should be the next step if there are any concerns raised.
Hope you get it sorted, whatever. I did also wonder whether there might be some chilblains involved here, especially if this has started since the weather went really cold.
Hi cowhide , I seemed to get sick out of nowhere just over 2 years ago, the GP did some tests and when they came back normal I did some private ones that showed low thyroid function, positive thyroglobulin antibodies and positive ANA but everything else was fine. I did see a Rheumatologist because of the Raynauds and ANA but as the other antibody tests were negative she didn’t think I had any connective tissue disorders and discharged me .
But since then I’ve started to have issues which have made me wonder about things, like the rash across the face, dry mouth, mouth ulcers and now the reflux and issues with the hands and having periods every 2 weeks too! Long standing problems are headaches, feeling cold all the time, sore and swollen hands and feet and sensitive to bright lights & noise. But realise that thyroid issues can cause similar problems so hard to know what’s really going on. I’ve been changing my thyroid medication too so that’s probably causing some issues to.
GP not very helpful, just thinks it’s the menopause now, which I’m 44 so it could be. But I guess with testing negative to everything 2 years ago then it’s unlikely to be scleroderma, srogens, lupus or anything like that? Or can things change over time?
I think a lot of women (and more women have scleroderma ) first get symptoms in their 40's and 50's and even if we have a positive diagnosis then as we move through menopause it's really hard to work out what's menopause and what's autoimmune.
A positive ANA on its own doesn't necessarily mean you have an autoimmune disease which is probably why you were signed off by the rheumy. I would definitely still talk to your GP and perhaps ask for a referral back to rheumy if symptoms continue once your thyroid meds are settled.
Have a good look at the SRUK website information as well (and possibly use their helpline if your GP is useless). A positive diagnosis is a combination of bloods and physical changes and you do seem to have several of the latter. I had Raynauds for years and then reflux / swallowing problems, and puffy fingers and then at some point couldn't tell you when because I have never bothered about my appearance, red broken spots on my face. I read some SRUK info when I was looking for more info to try and help my Raynauds and thought that several of the symptoms applied to me, and it was on the basis of my symptoms that my GP agreed with me (I did get bloods that confirmed it as limited systemic sclerosis as well, but perhaps I wouldn't have done it I had bloods 5 years previously before I had more symptoms).
That makes a lot of sense cowhide . I appreciate you taking the time to respond. I’ve had so much going on that trying to take everything in my stride and not get too caught up with things. Unfortunately my GP isn’t very helpful and the rheumatologist is so busy she’s made it clear that she won’t take on any new patients unless there’s a clear need so without blood tests confirming a problem I don’t think I’ll get a referral. So I’ll take some time to read the info on the website and will give the helpline a call to see what I can do myself to get to the bottom of this. I’m sure the cold weather doesn’t help much either, least next week looks warmer hopefully!
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