What sickle cell disease symptoms do you experience? What symptoms are the most severe?

[CalvinHU]

Have your sickle cell symptoms changed with age? Are there any specific triggers for your symptoms?

Share your experiences and interact with other members in the comments below!

[delectablydopecrown]

When I was a child my symptoms were worse but as I grew it got a bit better and when I reached about 18 it has gotten worse I would say, stress triggers my symptoms and so does the change in weather

[JJibogu]

My sickle cell symptoms haven't much changed generally it's been the same ranging from pain in my thigh, shoulder pains and few instances back pain, what triggers these pains range from multiple reasons stress, cold and dehydration. The trigger factors for sickle cell pain crisis however needs to be researched on. If one knows the trigger factors then perhaps one can avoid this. To avoid the trigger factors it's always adviced to drink lots of water, I have also learnt not to do excercise other than walking and I avoid rushing to anywhere. Symptoms vary from person to person.Some are noted to live a very health and balanced life with just spells of sickle cell crisis while some don't. Those that don't may have visited hospital severally for blood transfusion amongst others.

As I grow older I expect my sickle cell factor to become more prominent as I may perhaps have lesser immunity and stamina to withstand it.

[Floe1]

My symptoms where much worse when I was younger, when I was 6 years old I had my spleen removed. Oddly enough I had my first crisis last month after swimming, I think the temperature of the water caused me to sickle in my right knee. That is 24 years without crisis! I am 34 and have 2 kids.

[Living-Life in reply to Floe1]

Hi Floe,

So sorry your fun swimming was interrupted by crisis in your knee. Can confirm what you suspected begin a search in your city for a pool that meets your safety standards and warmth the coolness of the water goes into our bodies and consequently sends us into an SC crisis. Warmer water is our friend.

Blessings,

Living Life

[Della30]

Pain from the crown of my head to the sole of my feet, fatigue, impaired vision, breathing difficulties, insomnia, weakness. The most severe are pain, ache and fatigue.

If anything they have become worse with age and the residual effects. When I was young after a painful life almost goes back to how it was before the crisis. But with age after every crisis something else happens: hip pain that is always there, vision is more reduced, skin is dry, low iron levels, even my hair is not what it used to, easily get fatigued, etc etc. So age appears to make the symptoms worse. More susceptible to infection.

Triggers are stress, fatigue and s big stressor for me is change, be it the weather, cold to hot, hot to cold, change in diet, menstral cycle, emotional changes too happy or too sad.

[miriuska]

The most severe symptom is undoubtedly pain. Excruxiating, latent pain (it may vary and feel like needles running through the veins, a pneumatic hammer banging throughout your body, knees, wrists, ankles and joints throbbing) which does not go again with regular "domestic" painkillers and sometimes even IV painkillers don't do much and you need to go on morphine drip under hospital admission.

Other symptoms: jaundice of the skin and eyes, short and light breathing associated with abdomen and chest swelling and pain, pale skin or nail beds, numbness and tingling of chin and around the mouth, extreme heaviness of limbs (legs and arms), leg ulcers, gallstones, extreme fatigue, pain and problems with walking and joint movement (from avascular necrosis of the femoral head), emotional issues and a tendency for depression as it is hard to cope with everything, sometimes more than others.

It's not always the same even for the same person.

[Anzy]

My symptoms are more or less the same: joint pain, chest pain, swelling of extremities, it's just my reaction time that has changed through the years. I recognise triggers much faster than I use so I can prepare better. There are some things that are new for example because of the strength of the medicine I take it has worn away some of my stomach lining so I'm on a different medication so I can keep taking medicine which is a mind twist within itself.

[Arrey-Echi]

My symptoms changed with age. I had frequent crises and hospital stays as a child. But as an adult, less crises even going for a year or more without any serious crisis episode especially when my Dr introduced me to Hydoxurea. Stress, extreme cold and worries trigger crisis and sometimes, menstrual cramps.

[Living-Life]

Dear CalvinHu,

Great question, guess for me I have just become accustomed to living this way. From trying to relax, send this text, just holding the phone is causing my wrist to hurt, laying with knees slightly bent hurts or cuts down blood flow and I begin to feel the blood pulse as if slowing down. Swollen ankles as I have no more elasticity left in either ankle, chest pain so wanting, needing to exercise I don't feel up to doing and feel like am I going to have a heart attack? Eye problems borne out of stress, wanting to walk but knees ache so a friend suggested "Braggs" ACV 1Tbsp mixed/baking soda I decided to try 1Tbsp Apple cider vinegar"Braggs" plain to strong, next chased w/water continued and has helped my knees aches. Now can walk longer and farther.

Thanks for Your Interest,

Living Life