Help me Please: Hi, I have undiagnosed... - Scleroderma & Ray...

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Help me Please

A_C_Thomas profile image
14 Replies

Hi, I have undiagnosed Rynauds. I got a very bad ulcer on my right middle finger it is so painful that I can't sleep. if lucky I will manage to sleep few hours. I am taking Tramadol, Nefidepin and cannabis oil. I am keeping my hand warm by wearing gloves Nothing is working feeling annoyed. No help from Doctors. They only told from the scan that I have very less circulation on my palm on the top part.

Please help tell me if Raynaud's can happen in one hand only its happening only in one hand.

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A_C_Thomas
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14 Replies
Kevyneg profile image
Kevyneg

Me too. My sympathies to you. Yes, CBD Oil, Tramadol along with 2 to 4 Ibuprofen at,same time (but b careful not to take more than recommended doses of either in a day, it works) those two together boost each other somewhat to maximize their effect.

I try to limit all that medicine and get as much Neosporin (or one of the other antibiotic ones) onto the sore even pushing it under the nail if need be, then bandage. Get creative with bandages. They can be bulky. I use bandaid ckear strips. I go over the top,of the finger with one the around with so b wines two. Lasts mist of day. I cut them to meet my need. Lengthwise to make them narrower to go over top of finger.

Use Prevention. This is a circulation problem. Move ur fingers, jog in place, wiggle ur toes. Wear fuzzy boots and warm fleecy mittens, hand warmers. Don't let fingers/toes get numb or stay numb for any length of time. Hand warmers. They actually make heated gloves. I have seen them. Go online and look. A device called Light Relief ( Amazon) is a tremendous help. It is infra red light with heat if u like and it promotes curculation. Hope this helps.

A_C_Thomas profile image
A_C_Thomas in reply to Kevyneg

Thank you so much for the reply. My ulcer is not open so not sure if bandaging with the ointment will help. I have tried medihoney but it makes pain worse. can I ask if you have this Raynaud's in only one hand or more than one because I have a problem in only in one hand and the ulcer on one finger.

Kevyneg profile image
Kevyneg in reply to A_C_Thomas

That is the way it started. My most recent "episide", the sores moved back and forth thru all 4 fingers over both hands, then just when I thought it was over, it did it again. I had been undergoing an immense time of stress, a huge life change. The sores started way back in under my nails, so painful. When they emerged from under nail they were usually open and that was when I bandaged. The one under my big toe was open but the ulcer went way down deep into the toe pad. There were tiny ulcers around it. The toe was red hot painful and inflamed for 14 months before it reconciled. The worst. I use the infra red light proactively and as a treatment during episodes. I was diagnosed in 2003. Have to find what works for you, so keep blogging. There are lots of good ideas out there !

pino99 profile image
pino99

Get your doctor to prescribe sildenafil, it is now the treatment of choice for Reynouds and digital ukcers. Works wonders to reestablish your circulation. Best

MissusTee profile image
MissusTee

You really should be seeing a rheumatologist to rule out connective tissue disease. Take some photos of the ulcer too, and ask for a referral as it sounds as if you need an iloprost infusion in hospital. Have you had an ANA and ENA blood test?

A_C_Thomas profile image
A_C_Thomas in reply to MissusTee

I have seen a rheumatologist who put me on nifedipine 10mg tds and scheduled blood tests with was normal as to autoimmune disorders also referred me to vascular surgent who did a perfusion scan with was positive. None of the doctors that I seen including my GP seems to be taking seriously my pain I didn't have a whole nights sleep in over 2 months. pain worsens at night tramadol 50mgx2 not really doing anything to make it better cannabis oil and ibuprofen 200myx2 sow sow helps but not consistently. it's been two weeks since my appointment and still no plan of action scheduled by the two specialists that have seen me.

MissusTee profile image
MissusTee in reply to A_C_Thomas

2 weeks isn't long, in terms of what consultants do anyway. I'm surprised that they haven't scheduled an iloprost infusion. You need to make sure that your rheumatologist is specialised as it's unusual to see ulcers in primary raynauds, it tends to be seen in secondary raynauds.

Sph28 profile image
Sph28

I also suffer with terrible ulcers, where I live the doctors haven't a clue how to help, even my consultant wasn't sympathetic so I turned to Salford royal hospital and they have been amazing, i had operation in 2015 to remove ulcer a d this year i have had surgery in June and again in September, i couldn't go through with all waiting any longer as the pain is horrendous. You need to tell your gp that you need a referal to a specialist, go to a fracture clinic as they are brilliant and the hand surgeon should know what to do. I hope this helps.

8whitetoes profile image
8whitetoes

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barbarahealth profile image
barbarahealth

hi A C Thomas

I found info on these blogs that tremendously helped my husband who has Reynauds.

take twice daily....120mg of Ginko Biloba plus 100mg of Vitamin B3. There might be bit of flushing from the Vit B3....Best place to get it is a reputable health food store. He gets relief right away.

Chakula profile image
Chakula

I should try a course of acupuncture with an experienced acupuncturist, ideally one who has treated Raynauds before.

It should help the circulation and 4 sessions should be enough to see if it is beginning to help or not.

tall-tim profile image
tall-tim

Hello. My profound sympathies to you. I had painful finger ulcers for several years, but luckily now sorted out by medication (Methotrexate and Sildenafil). I found that using hot, salty water relieved the pain and helped slowly shift the calcareous liquor up to the surface, thus shortening the healing period. I didn't try hot poultices, but I imagine they might have the same effect (but noting that modern medicine seems to have forgotten to teach doctors and nurses how to administer simple treatments of this kind). Also, when the liquor surfaced I would use iodated, non-adherent gauze called Inadine cut into patches then applied underneath a plaster or bandage. It's important to keep changing the patches and dressings regularly to prevent clogging and the possibility of extra infection. I also tried using honey with dressings but it didn't seem to help. I also tried tincture of iodine and it stung like hell but didn't seem to help either. I suspect in most cases the problem is not infection from the outside but inflammation caused by the liquor on the inside. In instances where you can see the 'lake' of liquor is close the surface then a sterilised needle to lance it gives instant relief from pain, and helps move the process along (provided you keep everything antiseptic). The pain of the needle is negligible compared with what's already going on. I found that each ulcer always took between four and six months to clear up. That seems to be a normal trajectory for them.

Silver-thread gloves and mittens bought via the Raynauds & Scleroderma Association have been helpful all the year round, with bag-like ski mittens worn over the top in cold weather.

Anyway, that's a summary of some of my experience and wisdom acquired painfully over some eight years of suffering. I wish you well.

Tim

overnighthearingloss profile image
overnighthearingloss in reply to tall-tim

I thought I was the only one to have ever have tried lancing an ulcer. Illustrates how painful they are when you might be prepared to do such things. When I first tried iodine it was on an ulcer that had essentially healed but still continued under the nail. In this instance short of removing the nail you are in a sort of impasse. I was putting iodine on the nail and letting it soak through and did not get any discomfort. More recently however after being wowed by iodines power I put it on a finger quick to stop any infection setting in. And it made me yelp that time.

So I guess its another option for the medicine cabinet but the various treatments need to be selected depending on circumstances.

tall-tim profile image
tall-tim in reply to overnighthearingloss

<... an ulcer that had essentially healed but still continued under the nail. >

Could hot, salty water have helped draw out the nastiness? Worth a try. It seems to gather it and help move it outwards.

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