A Tale of Frozen Fingers and Viagra

Rena Newman avatar

by Rena Newman |

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Raynaud's, creative art therapy, wooden tooth, Diary of a Sjogie

Bonjour! What do frozen fingers and Viagra have in common? The answer is Raynaud’s phenomenon.

Let me tell you the story of when I first experienced Raynaud’s phenomenon and how it led me to popping Viagra pills daily.

Sjögren’s, Raynaud’s, and the patch

Oh, the comorbidities of Sjögren’s syndrome for patients like me. Who knew Raynaud’s would be one of the other associated diseases? And who knew Raynaud’s could be so vicious?

“RS Mayhem.” (Courtesy of Derrian Childress)

Raynaud’s first appeared in mid-July last year and caused my left index finger to feel cold and numb (and this was in Florida). It was like my finger had a miniature boa constrictor wrapped around it that was cutting off circulation while also being stuck inside an ice cube. I was taken aback by the random coloring of my fingers as well.

The pain became unbearable when my first ulcer showed up. There’s really something sinister about skin pain. My primary doctor told me my finger was necrotic, and we needed to do an emergency treatment with a nitroglycerin patch.

At the time, I wasn’t taking any medication, and the idea of a patch freaked me out. I could feel my stomach drop and my knees start to shake. Even the doctor’s soft foreign accent, which reminded me of my father, couldn’t comfort me.

Rx for Viagra

The sore healed, and I got in to see a rheumatologist. He examined my fingers and told me I needed to start taking medication for Raynaud’s. He wanted me to start taking sildenafil, aka Viagra, aka the “little blue pill.”

Viagra commercials instantly started playing in my head: “If you have an erection lasting more than four hours, …”

I chuckled, because I never thought I’d be prescribed this medication. Later in my journey, I discovered it’s quite effective in managing Raynaud’s.

My doctor also wanted me to start a second medication in conjunction with sildenafil, but I stubbornly held off due to anxiety, and I suffered for it. Read on to find out what happened.

Surprise! More necrosis and an unexpected procedure

By the end of November, the necrosis had once again reared its hideous head. This time, it seemed personal. I suddenly had dying tissue in three digits. No tickling the ivories for me!

A few days before Christmas, I had a stellate ganglion block, in which I was stabbed in both sides of the front of my neck (oh, joy) and injected with numbing medication. I would have had the procedure sooner, but I had to postpone it due to an old acquaintance, hypochondriasis, making a rude and unannounced visit.

I was annoyingly tapped on the shoulder while lively lies were whispered in my ear, causing me to gather inapplicable and inaccurate information. I was led to believe I’d be getting injected with … botulin!

The good news is that the procedure worked, and I didn’t lose my fingers. Thank you to all my doctors at the Medical Center Clinic at West Florida Hospital.

The bad news is that Raynaud’s is alive and well. However, I’m able to manage it now with medication, a concoction of sildenafil and nifedipine.

If you have been diagnosed with Raynaud’s or think you may have it, be sure to seek advice from your doctor before starting medication or treatment.

That is my story regarding frosted fingers and Viagra pills. Do I have a point? Yes, I must leave you with something!

Beware: If you have Raynaud’s, take it seriously, take care of yourself, and act on any changes that may occur, as she is an audacious, cold witch that doesn’t show much mercy and cannot be trusted.

Till next time, I bid you farewell.

Bonus feature: Fun facts about some of the ways I manage my Raynaud’s

  • I have five pairs of gloves I often use, depending on what I’m doing, the temperature, etc. My two favorites are space gloves (they’re thermal, and you should see the looks I get when I wear them in mid-August), and leopard print gloves (one has to look and feel fabulous sometimes). I also wear mittens when I sleep.
  • Every night, I use a fidget spinner, stress ball, and a heating pad.
  • HotHands warmers during the winter are a must.
  • I will not hold a cold can without a koozie.

Tell us about your experiences if you have Sjögren’s and Raynaud’s. What are some of the ways you manage Raynaud’s? Please share in the comments below. And a shout out to Laurie! Thank you for your lovely email. You are strong, creative, and kind.

P.S. Love the quilt pic.

***

Note: Sjögren’s Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sjögren’s Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sjögren’s syndrome.

Comments

Dee DeLuca avatar

Dee DeLuca

I have Sjogren's and Raynauds also. When tested by a specialist in autoimmune disease I was told that my Sjogren's was measured very very low and barely over the positive mark. I've noticed over the years that when I'm really stressed it does cause itchy dry ears and some dry eyes but that is it as far as the Sjogren's symptoms goes for me. In the winter, about 3-4 times when I didn't wear gloves I experienced 1-2 fingers going white in the joints on the very end. I would run under very warm water and massage and watch the color come back in the joint. Very strange to watch.

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Aimee McDermott avatar

Aimee McDermott

I had no idea women could take sildenafil! I have suffered from Raynaud's since I was in my teens. It was first diagnosed when I was in college and the only proactive thing I ever did to help it was quit smoking. Mine is not nearly as bad as the writer's-- I wear gloves early fall-late spring, and AC is really tough to live in with a summer work wardrobe. I imagine getting a prescription for my minor symptoms won't be as easy as it was for you.

Reply
Loretta Cassidy avatar

Loretta Cassidy

Thank you for the warning! I will be more aware and careful!!!

Reply
Loraine Johnson avatar

Loraine Johnson

I always use gloves when getting things from the freezer. Never hold cold things without covers. I also wear my exciting motorcycle gloves!

Reply
Bev Nord avatar

Bev Nord

I missed you last week. I really enjoy your humor. I look forward to mondays now! I have Raynaud's too, but it is not severe. Cleaning out a frozen turkey is excruciatingly painful, but that is only once a year!

Reply
Joan westermangoodwin avatar

Joan westermangoodwin

On reading your story today. My problems seem trivial, here in Canada at 85 years of age I am still trying to find a doctor who will confirm in writing confirm a very old diagnosis for my family doctor who says I am lying.. Recently saw an ear, nose and throat specialist.who was very helpful confirming that my Sjogren's disease is Primary and has been part of my health problems since birth, Unbelievable I think, vindication and help, maybe. Wrong, again the copy of the report says a rheumatologist (who I saw some months ago who had no comprehension of what was being said and didn't mention it in his report, HAD RULED IT OUT) so now once again no help no belief from my family doctor. It is sad to have lived so long with understanding from previous doctors and to have such disrespect now. That's five "specialists" I'seen in the last year. You are very fortunate to be receiving care and this stranger wishes you the best.

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Laurie avatar

Laurie

I appreciate your ability to use humor to help make our struggles bearable. I love the word “hypochondriasis”….as I navigate the varied symptoms of Sjögren’s my husband jokes that I always imagine the worst outcome before I even find out what’s going on. Your advice to pay attention and get the best care available is noteworthy. It’s easy to postpone dealing with it, but worth it when you get some relief. Thank you and hang in there! My mom used to say “When you get to the end of your rope, tie another knot and hang on.”

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Karen Wapinski avatar

Karen Wapinski

thanks for the notice about Raynauds, When my fingers froze from handeling frozen food I thought it was just old age ( Im 78) so now I ware gloves to handel any cold or frozen items . I got Sjogrens last year., my next dr. appt Ill ask about Raynauds. Thanks again love your posts

Reply
Maxine Morriss avatar

Maxine Morriss

I wish someone would give me something for all my diseases. I had Guillian Barre in 2000. After recovering 6 months or more, I became very ill, lost a lot of weight, food went right though and I was extremely weak. The doctors comment was for being so sick I certainly looked good! Not the right answer. After a couple years of being so sick he finally did a blood test and I was ultimately diagnosed with Graves Disease. After takiing medication that was making my mouth feel like metal and hurting they zapped my thyroid and I began feeling better except for my mouth. My eyes were in=volved by then with gritty, burning, watering eyes along with the mouth. My dentist said to go to a local dental school and be checked. They did a biopsy of my lip and diagnosed sjogrens syndrome. I have lived with this for 20 years. I also have Raynauds syndrome in cold weather. I recently lost my husband from dementia. I was care taker all but 9 months. I made it through his sickness with him and though I was weak with all the symptons, was
able to get all the business of selling the business and trying to move on. I am sick! 87! doctors don't take medicare
where I moved! When do doctors start believing you when you say you are sick--they did twice with me, when I had
a cerebral hemmorage and with GBS after I went to an emergency room totally paralyzed. Yes, I am still sick and
my eyes are killing me. My head is spinning off the wall and I cant function after 1:-00 in the afternoon. Yes I went
to doctors, Internists, rheumatoloogists (3) GP's. I'm just grateful to have a PA who will give me my prescriptions
for high blood pressure and asthma and COPD. Really--no one wants to do anything for you especially after 80 so all you people who think there is help for you, Good Luck. OK -- its duplicate copy -- that must be another way of saying
we aren't interested in your problem. Thanks

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