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lindahannah1974

Raynaud's questions, new to site

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Hello,

 

This is my first post to this board.  I am so lucky to have found it. 

 

In March of 2012 I had my first finger ulcer that appeared on the side of my nail.  I have had 3 more since then and am currently dealing with two, on on each hand with these ulcers under my nail.  My ANA test was 1>2850 and all other tests were negative. 

 

I have been diagnosed with  primary Raynaud's and IBS and have a strange rash on my face since April of 2013.  I am on nifedipine and recently was given nitroglycerin cream.  I have not found relief with the cream.  The pain from the finger ulcers is incredible.  What I am looking for here is how to find relief from the pain so I can sleep at night. 

 

I saw my Rheumatologist last week and was given the cream.  I am about to email my doctor and am wondering what I should ask her to help the pain at night.  Any help is appreciated. 

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Hello Lindahannah

 

Many people find ulcers painful so don't feel shy about telling your doctor the pain you're in, size has nothing to do with it! It's also worth remembering that when it comes to pain relief opiates and that sort of painkiller aren't the only option, medications that address nerve pain can help, something like gabapentin/pregabalin although not designed as a painkiller are used to help with neuropathy and nerve pain. Although very effective they take awhile to kick in. You could also consider something to help you sleep although that's not going to work long term.

 

The best advice I can give you is to say that you know you are in pain so don't let doctor(s) tell you that you aren't, sounds daft but what I mean is insist that you get help because doctors can be dismissive about pain, perhaps pain management can help?

 

Have a look at this article and follow up post that contains other articles about chronic pain management, often doctors hesitate to prescribe fearing potential addiction but as the articles explain this is highly unlikely unless someone has certain risk factors.

 

Please let us know how you get on and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Lindahannah,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with digital ulcers; thankfully, I haven't experienced these myself, but I can understand how painful and unpleasant they must be. I agree with Amanda that you should contact your doctor and see if he can suggest some pain relief / management to help you, as being in constant pain can be very wearing and debilitating, especially if you're finding it hard to sleep.

 

I've included a link to our medical pages on Pain management and Raynaud's which I hope you'll find informative and please do keep posting and let us know how you get on.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Linda,

 

I'm so sorry to read of what you are experiencing, but I'm very happy you found this great supportive site as well!

 

Both Amanda and Jo have provided good information; I am hopeful you have like your doctor and have good communication, which is key in being your own advocate! As Amanda mentioned, please do get in touch with your doctor and let him/her know exactly what you have shared here, with us! It's so important to stay on top of your pain, as you are trying to cope with the ulcers.

 

Please keep us posted as to how you are and if you've gotten good results visiting with your doctor. :emoticon-hug:

 

 

 


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi,

 

Are you sure this is primary Raynauds? It is extremely unusual to have ulcers with primary, and with your ANA screen being positive, I would suggest you go back and ask for further testing (ANA panel, ESR, ENA) and ask for someone to check you out properly. You really need to be seeing a rheumatologist that specialises in Scleroderma.

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What she said!

A doctor who specializes in sclero is the ticket! I found that out the hard way after 3 regular rheumatologist's! One being a very good one at a prestigious clinic had somewhat of a clue but still dropped the ball.

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Hi Lindahannah,

 

I am sorry you are experiencing these digital ulcers. When I was high school I used to get them a lot. While a nitrolingual spray on my wrist helped to open the capillaries in my fingers and heal the digital ulcers, I have also used other things to help with the pain in the meantime. A topical anaesthetic gel like lidnocaine (there are other types which I just can't think of the names right now) simply numbs the area. It comes in different strengths so you should be able to get some relief. It does need a script so I would recommend speaking to your doctor. Sometimes doctors need a little nudge to think outside the box a bit :) Good luck. I hope you can find some relief and get some sleep. Jess xx

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Hello Lindahannah

 

Jess has made an excellent suggestion with the topical treatment to help with the pain. You can also get *lidnocaine in a sort of patch that you can stick onto the skin around/near the ulcer. I had these patches and I used them on my feet and they were helpful just not enough for me.

 

Take care.

 

*Medicinenet.com says:  Lidocaine helps to reduce sharp/burning/aching pain as well as discomfort caused by skin areas that are overly sensitive to touch. Lidocaine belongs to a class of drugs known as local anesthetics. It works by causing a temporary loss of feeling in the area where you apply the patch.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Jess

 

It's great that you are prepared to set up a group because there isn't one, this is how things get done. Someone has to do it and if you do I really hope it's successful and, speaking as someone who hosts a local group, it's totally worth it. The support you'll get from it's invaluable.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Wow Amanda, that's fantastic. Mind you it's very early days as I literally had the idea less than a week ago, but hopefully by early next year I should have a group organised and I'm sure that page will help. I may also need to drop you a few/a dozen questions as I have no idea what I am doing. Thankfully Google knows everything! Talk soon, and take care, Jess xx

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