What Does a Sickle Cell Crisis Feel Like?
One of the most widely discussed symptoms of sickle cell anemia is a sickle cell crisis. This is an episode of pain caused when sickle-shaped red blood cells block the body’s blood vessels and prevent oxygen from flowing.
One can read the biological explanations of such a crisis, but can’t really understand what it feels like without having the disease. So, it is only natural for people to wonder about it. I’m constantly asked what a crisis feels like, but I never know how to respond. I can explain what can be done to lower the chances of a crisis and to help relieve the pain, but describing that pain is a challenge.
I recently shared a post on social media expressing my struggle to respond to such a question, and I asked my followers, most of whom have sickle cell disease, how they would describe the pain. I was met with a range of responses; some I have heard before, while others took me by surprise.
The most popular response was comparing the pain to being stabbed. One person wrote, “I say it feels like being stabbed repeatedly while having a migraine throughout your whole body.”
The second most common response was comparing it to broken bones. Some noted that it feels like “multiple fractures” and “broken bones and glass flowing through my body.”
Others mentioned being electrocuted, while some could not describe it but stated that the pain is truly immense.
One of the more descriptives responses was: “For me, it’s like taking a rubber band & tying it on your finger over and over and over again until you can’t anymore…leave it for a few minutes, take scissors and SNAP that rubber band…now imagine that stabbing pain you will feel on that finger for a split second plays on your joints NONSTOP…until, of course, the painkiller kicks in.”
Even after reading the responses, I still struggle to describe the pain of a sickle cell crisis to others. I have never experienced the pain of being stabbed or electrocuted, and I have never broken a bone in my life (touch wood). So I can’t make those comparisons with total confidence.
I understand that each person with sickle cell disease has a different experience, so I do not discredit the descriptions my followers provided. As for the pain that I experience, all I can say is that it is debilitating and I would not wish it upon anyone.
I always look to others who deal with sickle cell disease with such admiration. We go through so much, and the world is none the wiser. Our strength is unmatched!
Those of you with sickle cell, do you agree with these comparisons? Would you describe the pain differently?
Those who don’t have it, are you surprised? Have you heard these comparisons before? Please share your thoughts in the comments below.
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Note: Sickle Cell Anemia 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 Anemia News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.
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Comments
Shannon Williams
Life with sickle cell anemia is one serious challenge. Pain feels different almost every time. Sometimes it like nails being twisted into my joints but other times I can feel it coming and the cluster of it only in certain areas. But I have found that if I think positive and drink lots of water I can handle it.
Wunmi
The pain differs from time to time.
Your example of tying a rubber band on ones finger is apt and I uses it myself when trying to explain. However, I add that people imagine that finger pain and compound it multiple times over and also to remember that their pain symptoms diminishes quite quickly as they are in control. We Sickle Cell warriors cannot remove that "band, twine etc" and the longer the blockage, the more severe the pain is and we just have to ride it out.
The annoying thing is that even many Doctors at times think we are just big babies crying and they disregard the severity, this is where I'm lucky with my haematologist team - they know and they work with quickly to alleviate and control.
I went through hell when I was at University as I the hospital round my Uni were filled with Drs that knows nothing about my condition and all the while the soft tissues of my hip bone were dying but was never treated or even investigated. Upon being back home, my usual team were on the case and I was operated on.
We guys are a different breed. If other only know.
Somersinger
Thanks everyone for sharing your descriptions of the crisis pain; I can relate as I've found over the years that the inset of a crisis pain can feel different and initially unfamiliar depending upon what aggravated it .. hot or cold weather, fever. Once it simulated a heart attack including nitro-tablets under the tongue. Extremely painful, and scary! 2 days ago the weather suddenly turned very cold. I battled joint pain ALL DAY like sharp teeth biting at my knuckles, elbows, my ears, and toes. My legs felt like steel rods had been inserted and were too heavy to manuever. I was listless and lethargic. Got under my electric blanket, drank lots of water around 2am I begin to feel
better. The weather temp had warmed up I found out, and thankfully avoided involving hospital. At times when not so lucky in full blown crisis the pain is like a monster with huge sharp teeth chopping down on my body breaking thru my bones joint by joint only I'm not being eaten and swallowed to allow death to relieve me of the pain. So it's seemingly a never-ending torture until the pain meds can out smart the crisis pattern .. sometimes it can takes days. I've experienced as much as 2 weeks or longer, but am delirious and can't remember beyond that. I always get the flu, pneumonia, even shingles vaccine to serve as deterrents to crisises. If not I'm sure I'd have many more much more often, but this Covid vaccine scares me. If there are side effects that could also set off crisis ... will I survive it? If I contract the virus, will I survive it? Lord, on your mercy I am depending.Prayers for us all!
Goodness And Mercy Ogunleye
hi, I have had sickle cell anaemia for my entire life (i am 16 years old) and the best way to describe the most prominent pain is an electric shock to your heartbeat that comes in waves. Sometimes the pain can instantly change where it is (e.g. from your right arm to your left leg)
for other pains, it can feel like your limb is being suffocated and has a throbbing sensation.
for most of my childhood, I spent it in the hospital most especially when I was a toddler, I would be there every weekend and the sad thing is that I am not the only one who has it in my family, My older sister who is now 20 struggles with it too and so did my brother but unfortunately he died from it at age 2 he would've been 25 this year may his soul rest in perfect peace!
The longest I have ever stayed in the hospital for was roughly 3 months, I couldn't walk and had to use a wheelchair for mobility or crawl on the floor I was 8 or 9 and I still remember it like yesterday I also had to be put on oxygen because I was unable to breathe
as a person with sickle cell anaemia, we'll all have our bad days but remember that the hard times will surely pass and better days will be upon us, remember to stay hydrated my x
Toto Elias
Dear Goodness And Mercy Ogunleye,
Your story truly resonates with me; I cannot even imagine enduring such pain. I am currently writing a research paper that incorporates the struggle of Sickle Cell disease. I would like to ask you for your permission to use your description of the pain caused by Sickle Cell disease. If you do agree, could you please reply with the name you want the quote to be under: it could be your real name, anonymous, etc.
Thank you so much,
-Toto
Shareefah Ayomide
Hii. I'm sixteen years old, and I'm a carrier of the sickle cell disease. When I experience crisis, it feels as if I should cut that entire part of the body away. It usually feels as if I should just stop breathing. The funny part is, when I think of clustered blood cells, I feel very irritated. I happen to be mildly trypophobic..😅.
You know, being aware that you might not live long is very depressing. Sometimes, when I read for exams I think: "I might not even be alive to see the result of this exam. I might not even live long to reap the fruits of this labour." I'm grateful that it hasn't affected my life in any major way, anyway. I have an amazing social and school life. Although, there are activities I wish I could partake in. Sports, for instance. My parents wouldn't even hear of it...😅.
I was in Biology class one day and we were treating genetics and hereditary. The teacher asked if anyone could tell the class about the sickle cell anemia. Sure, I raised my hand, thinking: "I could talk about this for years." Then I started to explain and it got to a point where I almost burst into tears. I took my seat when I couldn't handle it anymore...
I've learnt to appreciate things my mates don't; those little things that normal people don't think about. I might not see it for as long as they can. God has been my greatest support, and I pray he continues to help me, and everyone else facing this challenge. Everyone has their own fair share of life; this is what life has given me. What else can I do than to try to survive?
May God help us all. Ameen.
Gretchen
If you've ever crushed the tip of a finger on a door or drawer. If you have ever kicked the corner of the wall barefoot with your little toe, you may have an idea of what I feel, with the difference that the intensity of our pain is too worse, in several parts of the body at once And it doesn't go away in a while.
Teigan Gyan
It is so true that living with this disease is not easy and the worry of always making sure you are warm enough or not.
The pain of the crisis is not something that I can describe I just feel like I'm dying and do not wish it on my worst enemy.
Doreen Victor
I just feel like the pain is always there, Somedays it's at 4-5, and some days it's at 9-10.... Well the pain can't really be described at it's fullest but. There is always that feeling that you're being poked or stabbed by little pointy iron nails. There is also that feeling of suffocation in you.... or sometimes you can experience both and even more.
But, Honestly living with sickle cell in my life hasn't been easy at all. It has given me depression, anxiety, gastriatic ulcers... and more of that it has given me hip bone dyslapsia.
Sickle cell, has changed my whole life socially cause of Anxiety and Depression, and my hip dyslapsia, cause my legs can't function accurately as they used to,I can't go outside for a small walk cause later my hip will start paining... and that hip pain may cause another crisis. And also, I can't go out with my friends anymore cause of the hip dyslapsia... and this has affected my social life in general.
Well; it has affected a part of my Academic life, cause I nearly get admitted like every single weak. It has reached a point where I'm even scared to go back to college. Has also affected me Emotionally... All that I know Sickle cell; Does not cause only a single pain. It causes you a lot of pain it's either one way or another.
And. Sometimes it's tiring cause it's not easy experiencing all this and more at 17.
Oche Emmanuel
Pain episodes in sickle cell feels so bad and frustrating. I'd say, the intensity of the pain is indescribable as I get to forget how it really feels each time I get better.
Sickle Cell crisis hits differently - we never gets use to the pain.
Bubacarr Minteh
For me is like you are beating me with harmer in my bones
Ny jones
Hello, I ONLY have sickle cell trait, but I experience a lot of the same things you all do. I was diagnosed as a child and have always hurt in random parts of my body, slept alot (15+ hours), and lots of joint and muscle pain, sports have always been a challenge, working for long periods of time etc…My doctors tell me “you couldn’t be feeling anything, because you don’t have the disease, ONLY the trait. Even after I explained to him my legs and feet feel as if I’ve been Leaping from roof tops all night and then went and got Asian acupuncture all over my body, it wasn’t enough air in the world that could help:( and still no help, just OTC meds. Wouldn’t want me to become a junkie, from relieving REAL pain. I hope you all find relief! Me too.
Elijah
You guys are cracking me up! Thank you for the uplifting accounts. I feel better about myself.
Ummu Sulaym Muslim
you thank God bcs you are very luckyyyy!
Ummu Sulaym Muslim
Good day everyone! i just saw this page and decided to join it. i am an 18 years old sickle cell patient and wish to thank ALLAH for his mercy upon me. i personally feel totally different, mine is just like a clot of blood trying to forcefully bulge out, any breath of mine is an addition to the increase in pain. if the pains begin, i don't always have any control over myself again. i once had crisis alone at home and found my self at our neighbour house at our opposite street. how i got there was a question i still ask myself even though i was informed when i later recovered. but now i thank God for the drugs i am using, its been a long time i had any crisis. i am on some herbal medicines which i wish to share for any seriously interested person
MWASE MACKRINE PACU
Hi dear kindly share with me the name of the herbal medicine am a mother who has 3kids leaving with sickle cell 🙏
Andy Charis
Hi Ummu. Kindly share with me the name of the herbal medicine. My little baby was diagnosed with SCD at 4 months. I can just imagine the pains he goes through. He can really cry for hours or a few days end to end nonstop during crisis even with medical attendance.
Afia
I came to this page because I was looking for descriptions of pain that I could relate to. I dont have sickle cell anemia( I am AS) but I deal with debilitating hip pain and associated menstrual cramps that make me immobile or greatly impair my mobility for days to weeks after my menses ends. I am limping as we speak. Unfortunately I am not taken seriously at all by doctors. They either can't believe it's due to my period or they think I am exaggerating. My bro is SC and he seldom had any pain except a year ago when he had some random abdominal pain and it made me wonder if I would have been taken more seriously if I had a more established diagnosis like him.
I feel so much for anyone going through chronic recurrent pain. I hope more means of pain management and prevention are developed in the future. Sending hugs.
Shareefah Ayomide
Hii. I'm sixteen years old, and I'm a carrier of the sickle cell disease. When I experience crisis, it feels as if I should cut that entire part of the body away. It feels as if I should just stop breathing, and I start to wish I never existed..😅. The funny part is, when I think of clustered blood cells, I feel very irritated. I happen to be trypophobic..😅.
You know, being aware that you might not live long is very depressing. Sometimes, when I read for exams, I think: "I might not be alive to see the result of this exam. I might not live long enough to reap the fruits of this labour". I'm grateful it hasn't affected my life in any major way, anyway. I have an amazing social and school life; though my circle is small, it's still amazing. Although, there are activities I wish I could partake in. Sports, for instance. My parents wouldn't even hear of it...😅.
I was in Biology class one day, and we were treating genetics and hereditary. The teacher asked if anyone could tell the class about the sickle cell anemia. Sure, I raised my hand, thinking: "I could talk about this for years". Then I started to explain and it got to a point where I almost burst into tears. I took my seat when I couldn't handle it anymore.
I've learnt to appreciate things my mates don't; those little things normal people don't bother about. I might not get to see those things as long as they can. God has been my greatest support, and I pray He continues to help me, and everyone else facing this challenge. Everyone has their own fair share of life. This is what life has given me. What choice do I have than to try to survive?
May God help us all. Ameen.