When I Feel a Sickle Cell Crisis Happening, I Follow These 5 Steps

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

Share this article:

Share article via email
A banner graphic depicting friends standing on a cliff overseeing a mountain range.

The word “crisis” is probably the most accurate term for what happens when pain kicks in from sickle cell disease. The dictionary definition of a crisis is “a time of intense difficulty or danger,” and that’s exactly what happens during a sickle cell crisis.

When I have one, it feels like the peaceful existence I once knew crumbles away. I tell myself that it’s my body’s way of saying I’ve done too much. However, this is the most excruciating message possible. Pain is inevitable in life, but the degree of pain from a crisis often feels out of this world.

I’m fortunate in a way that many of my crises happen at night when I’m about to fall sleep or just falling into a deep sleep. I wake up because I can feel a change in my body. I’m not sure if this is common with others who have sickle cell. As the pressure begins to build all over, I become overly sensitive to all of my body’s functions, such as breathing, digestion, and blood circulation. My extremities feel cold, and then the pain begins to slowly set in.

Recommended Reading
Ardent trial of IMR-687/sicklecellanemianews.com/enrollment completed

Imara Completes Patient Enrollment for Ardent Trial Testing IMR-687

In my experience, the pain doesn’t peak right away, but rather after a short buildup and crescendo. During this window, I have an opportunity to try to prepare before the pain reaches its peak. I can’t quantify how long this window lasts, because it depends on how quickly I respond to the initial signals.

However, within this time frame, I move as quickly as possible, while I can, to achieve the following five steps if a crisis starts at home:

Medication

I take the strongest medication and the maximum dose as soon as possible. My doctor advised me that the earlier I take analgesics, the shorter the duration of a crisis. Once I’ve taken an initial dose, I take a mental note of the time and keep alternative medications close by my bedside. I have to hope the medication will kick in from this point on, and that the crescendo will be more of a whimper.

Hydration

Crises are often brought on by dehydration, so drinking plenty of fluids is important. I try to drink twice as much water as I normally would. I then expect to expel it relatively quickly, so I usually keep an empty container around. Mobility is really limited when a crisis hits, so this is all to aid my comfortability.

Heat

Heat is effective at managing my pain at home. A hot water bottle is a perfect tool to help me manage the pain. While on my little journey to take my medication, I turn on the kettle so that I can fill it up for my trip back to bed. The heat soothes and provides comfort.

Favorite things

Really strong medication often makes me hungry, so snacks are required to help me get through the night, as well as to keep my spirits up! I always choose an anime to watch, which helps to distract me from the pain, because I usually can’t sleep the first night. When I reflect on this, it’s crazy that the opioid medications I take don’t put me to sleep. Drowsiness is one of their main side effects. That’s how painful a crisis is!

Decisions

I have no control over how severe a crisis will be, even with the previous steps in place. Sometimes this is enough to contain them, and I’m in for a rough few days at home. Other times it simply isn’t enough. If the pain continues to be unbearable, even after medication, I must go to the hospital, although that’s my last resort.

Do you feel a crisis before it comes on? What do you do to try to mitigate it? Please share your thoughts in the comments below. 

***

Note: Sickle Cell Disease 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 Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

Maria avatar

Maria

I am a nurse and always try to ensure that all of my Sickle Cell Clients have standing 'as-needed' orders for the early access to treatment at our ambulatory care IV clinic to receive litre IV fluids over one hour. This we will often support with an anti inflammatory IV medication like Ketorolac or narcotic if required. The clients are asked to call our office to let us know that they are going for the treatment, and if it is not improving after three treatments on 3 days, with additionally the methods mentioned in your article, we will ask them to come in to the ER for a further assessment by a physician. These early treatments usually will do the trick at diverting the cascade of crisis development. It takes minimal time out of clients' lives, as they can book ahead and will only be at the clinic for about 1.5 hours. We also provide this treatment before any stressful situations, like pre & post procedures, pre & post dental work, and pre & post other stressors such as Hiking high elevations, other intensive sports, academic examinations, And most commonly Air travel lasting for more than a couple of hours. This is all very advantageous at providing a more stable pain free situation. End of the day it helps to prevent downtime from normal lives and probably even more importantly, further organ damage from crises. Please ask your provider whether this is a possible program where you are. It is important to note we live far north and for six months of the year our temperatures are pretty frigid, which can provoke more frequent crises if not well managed. I hope this helps.

Reply
Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Maria. Wow, thank you this is a really interesting method of preventative care as opposed to treatment. Where I am we do have day centers that patients can drop in and request treatment for less severe crises. However, it's interesting to hear you can request treatment before any stressful situations! I'm making a note of this!

Reply
Titilayo Talabi avatar

Titilayo Talabi

Hi I still wants to believe that God can give us a permanent solution to this crisis. I wants to ask if anyone is aware of the outcome of the researchers, that has been carried out in regards to this sickness. Years back people were dying of HIV AND ADS.But today the story is no longer the same.Please let's put heads together and find out about the outcome of the research , location ,amount and how it can be distributed. thanks.

Reply
Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Titilayo. Yes, I hope there is one day a permanent solution to sickle cell crisis. There are interesting articles on this site about new research!

Reply
Bamidele Olodun avatar

Bamidele Olodun

Over the years I have built up the strength and know how to suppress a crises. I had to teach my body. I have gone 12months without a crises and I have also had monthly crises that requires hospital admission, the first since my existence..Hehe.. That has been the most unbearable period, imagine having to be hospitalised month in month out for 12 months.

I have learnt to always have pain killers with me, most especially morphine and Ibuprofen, so at the slightest I nip it before it grows.

There are days I get away with it and there are days I don't and would still require IV Morphine in the hospital. Most times I'm fortunate to have it at night which means no sleep and I distract myself with movies, typically it lasts btw 30mins- 1hr45mins or 2hrs , in the process I sleep off because it's so tiring and energy consuming.

Tips:
Don't over work yourself, know when to say NO

Have painkillers with you always, especially the ones your body responds to faster

Know when to have a good rest (clear off a day or two or three, it helps your body reset)

Drink lots of fruit juices if you don't like water like me

Know your body well and train it to adapt to pain and how to suppress it. It helps

Know when to go to hospital.

Thanks

Reply
Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Bamidele.It is great to hear how you have trained yourself to avoid crises! It is very inspirational. I really need to remember to take my medications everywhere too because that's where I always get caught out. Thanks for sharing your tips!

Reply
Judy lyttle avatar

Judy lyttle

I'm 57yerar with sickle cell since age 5...my crisis comes on slowly..so like you I have an open window to get ready..put on my oxygen..takes my pain medication with extra water..plug in heating pad..turn on my music.Pray to my God for a quick recovery.

Reply
Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Judy. Thanks for sharing this experience, it's nice to know I'm not the only one that experiences this! Oxygen is another thing I could add to my preparation!

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.