Severe finger pain

[Lily A]

I have had a very hard time for the past 3 weeks.  Increasing severe raynauds symptoms digital ulcers and extreme pain in one finger constantly, NOT related to temperature. (Reminds me of RSD) This wakes me up constantly at night and I have been unable to sleep for the past 11/2 weeks and have gone through oxycodone and a fentanyl  patch in hope for some pain relief but received none.
 My husband and I sought info on hyperbaric treatment and even went to the DO's home/ office but were to wary of trying it.  My Md refuses to look into AP and sent me to  vascular surgeon instead.  He said he can do nothing for me at this time.  He wants me to continue using nitro paste as much as possible and to see another hand surgeon to be evaluated for a digital sympathectomy after  the “holidays” The surgeon gave me Xanax to sleep- which did nothing.
I am also on 45mg of procardia and baby aspirin. 
In the past four days i have had 2 acupuncture treatments and did not notice any real difference .
Thanks to my mother for the past 2 days I have taken a clonopin and hydrocodone at night and i have finally gotten some sleep.
My husband has been taking off but has to go back to work on Monday and the kids are off all week.
 Believe it or not I never complain but i don't know what to do.
I have an appt with Dr. T. in Boston at the end of January.  I don't think I can wait until then. I will call my primary care md on monday and see if she can help in anyway.  Does anyone have any advice to help me get through this?
LilyA

Edit Note: Sorry Lily, had to edit out Dr T's name, as we are not permitted to use physician names. Thanks for your understanding. 😉

[Maz]

[user=920]Lily A[/user] wrote:

I have an appt with Dr. T. in Boston at the end of January.  I don't think I can wait until then. I will call my primary care md on monday and see if she can help in anyway.  Does anyone have any advice to help me get through this?

Lily, so sorry you're in so much pain. I know how it feels and also how frightening it can be waiting for your first appt while in that kind of pain.

Would you like a listing of AP docs for your area? Perhaps you could get an appt sooner with someone more locally and still keep your Dr T appt? That way you could get started on AP at the very least.

Let me know and I'll send you the full NY/NJ listing. Hopefully the great RBF sclero gang will chime in with suggestions for you to get through this early period.

Peace, Maz

[Lily A]

Hi Maz,
Thank you for responding.  I actually have the list and several of the md's i called are unreachable.  THE MDS in the city i have contacted but they do not take any insurance.  We are going through the list again and reevaluating our options.
Thanks again Maz I appreciate your response and concern.
LilyA

[linda]

one of the things that can help with hand and finger pain is a paraffin bath, as Maz mentioned in one of her posts in the holiday boutique items thread; I thinkj there were some other suggestions like hand warmers, etc, that might help you sleep at night. Good luck with your doctor search.

linda

[Lily A]

Hi Linda,
Thank you for your response.  I do use handwarmers- about 3 pairs a day and during the night.  I have a paraffin bath but with open ulcers I am hesitant to use it.  Thank you and Maz both. It really helps just to know someone understands.
LilyA

[Kim]

So sorry, Lily, that you are experiencing such pain.  Have you talked to your doctor about Revatio or Viagra for better circulation?  I personally haven't used it, but others have found it very helpful.

[Parisa]

Manuka honey can be good for healing ulcers if there is infection.  Most of these ulcers are initially due to poor circulation but infection can later set in. 

Do not allow fingers to get cold for any reason.

Paraffin wax is a good suggestion.

Viagra has helped some with the circulation.  If that works, look into Cialis which last several days versus hours.

If you need vicodin to sleep, take it.  The body cannot heal if it is sleep deprived.

Hang in there.  This can get better but it's going to take some time (and warmer weather.)  We were afraid my husband was going to lose parts of his fingers a couple of years ago.  He has now gone through two winters without any ulcers.

[spacehoppa]

Hi Lily,

I have a friend with Raynauds and I gave him a bottle of magnesium oil I had spare, as I had read that it helps a lot with raynaud's type pain in the fingers. He uses it whenever he gets an attack and says it makes the pain ease up within seconds. I think this is because it dilates blood vessels slightly, though I'm not completely sure. It's also very good for arthritis pain generally, and I often rub it on swollen joints with great relief, within seconds or minutes usually.

Just type in 'magnesium oil' into Google and you'll find lots of places that sell it. You don't use much each time so it lasts for ages, so it's quite cost effective.

The only contraindication is if you have kidney disease. In that case, don't use it as your body will have a hard time excreting any excess magnesium that your body hasn't used. Apart from that, it's entirely safe and is a mineral that we are pretty much all short of in our diets, because you only get it from green leafy vegetables. Our bodies need a lot more of it than they get each day.

Even my mother in law tried it on her peripheral neuropathy pains and found it helped tremendously, but she couldn't continue using it long term as she has kidney disease caused by her diabetes.

I do hope you find some relief soon.

[Lily A]

Hi Maz,

I would love you to send me the full list of AP MDs in NY and NJ.
My soon to be X-rheum. has agreed to a script for revatio which I will try asap.
Thank you to all for your continued responses and congratulations to Spacehoppa on your beautiful new baby!!
LilyA

[Maz]

[user=920]Lily A[/user] wrote:

I would love you to send me the full list of AP MDs in NY and NJ.

Hi Lily,

I have sent you a private message. To retrieve it, just go to the top right of this page and click on where it says, “You have 1 new message…” right beside where it says, “Logged in as Lily A.”

All the best in your searches!

Peace, Maz

[JOJO19551]

LilyA, I also have SD and my hands were quite a problem.  I started on a calcium channel blocker, 30 mg to start.  It helped but did not make a good quality of life.  My dermatologist increased the dose to 60, then to 90 mg.  My hands feels fairly well now, considering I could not open a file cabinet drawer without feeling like I had razor blades in my hands.  Also, she gave me Talconex, a sterroidal cream that I apply every night.  I do not see an AP doc, the Derm gives me my Minocycline.  As long as no organ involvement, I am sticking to my Derm and Internal Med Doc.

Keep trying things until you find the right one.  Best wishes, JoAnn

[Goodwife]

Hi Lily,

My hubby had a very similar experience in 2006 , shortly after being dx'd with SD – he had an ulcer that turned into an open wound on the tip of his finger – it was getting worse and worse – he was already on a calc. channel blocker, did nothing, then the rheumy at the time put him on nitro patches, – did nothing but give him massive headaches – then he gave him a script for a blood pressure med – he never filled it – he did not want another med that (he felt) wouldn't work – the rheumy also suggested the nerve block surgery that you mentioned – very drastic and scary for us- shortly after this, my hubby went to a naturopathic doc – he put him on a strict antiinflammatory diet and then 4 weeks into the diet, our GP gave him a script for the mino – started that – at the 6 week total of all this, went back to the naturopathic doc and he felt like he witnessed a miracle – my hubby's ulcer was almost gone, and the swelling in his hands was almost back to normal – he could not believe it.  I still can only attribute it to both the diet and the mino – I think the diet knocked the inflammation down in his body, and the mino was able to take hold.  This was our experience – I can't say that it would work that way for you or anyone else, but I didn't want you to feel like things are hopeless – because I know that is how we felt when the doc was talking about the surgery – we felt very hopeless, discouraged, and scared – but things worked out for us – it is still an ongoing struggle with his hands, even 2 years later.  As far as pain, it was the ulcers that were painful – when he would bump the tip of his fingers on anything – his hands themselves weren't in pain.    Good luck and keep posting!

 

 

[Lily A]

Hi GW,
Thank you for your reply and info.  I am so glad your husband is doing well.  I am impatiently awaiting my appt with Dr. T in Boston at the end of Jan. and am trying to do everything I can to move it up.  My pain continues to be severe but  I am now taking revatio (viagra) in hopes that that will help.  I am also taking ambian (for the past 2 nights) and percocet which thank God is allowing me to finally sleep.  We suspect there may also be an infection in this one finger so I am also taking augmentum.  I hate taking so many meds especially when I don't even know if they are doing anything to help.
My family- 3 kids age 13,11 and 7 and my wonderful husband have been so helpful but I have felt so useless and out of it for the past three weeks.  I just want to get back to normal.
I would love to hear more about the diet your husband was on, could you send a private message with some details?
Thank you so much.
LilyA
 

[Eva Holloway]

Hello Lily,

my name is Eva and I have Dermatomyositis. I have had lots of pain, scaly skin, cuts on almost all my fingers and could have bought stock in Johnson & Johnson with all the bandaids I have purchased.

Someone on the Road Back talked about Manuka honey, so I checked into it and purchased my first jar in December and then I bought the hand lotion and finally the wound honey. I use the wound honey with a little of the Manulka honey hand lotion and some Vaseline,E and Aloe. After I rub that into my skin I put white cotton gloves on and wear them all day. After now four weeks of that I can tell you my hands are doing soo much better :D.

I purchased about 10 pairs of cotton gloves and change them every day. I use the Manuka honey also, put it in my food or just eat it of the spoon. You are supposed to take a teaspoon of honey befor each meal. The honey is strong, the first honey I purchased was less than 10+. Anything over 12+ is the best.

I order the honey and lotion from a place called the “honeyshop.com” It takes about ten days to get your product since it comes from New Zealand.

Hope your appointment with the doctor turned out okay.

When you have open wounds the parafin is not to be used. I have one and it was banished to the garage when my hands did their own thing. Now that my hands are looking better I may bring it back into the kitchen again.

I wish you well, I hope for less pain.

Eva 😀

 

 

Eva Holloway

[Eva Holloway]

well everyone, it has been almost four months since my hands hurt real bad. I had a problem again this week, but I think this was because I had been taking only Biaxin for three weeks following the allergy problem. I am back on pulsing Minocin and Biaxin and I think that brought on three days of very sensitive skin and some sores. Seems to be healing up now. I an still using the Manuka honey and vaseline with aloe and e.

I have checked with my medical diary how many times I have had this problem and it seems on the beginning after I started AP it was like every two months and then gratually every three months and now four months, so something is working, slowly but surely:D

It could also been from stress, since my husband lost his job and we had to change insurance from his employer to Medicare and all the other stuff that goes with it.:(

Eva 😀

 

 

Eva Holloway

[Author]

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