Help Needed Determining Source of Sev... - Living with Sickl...

Living with Sickle Cell Disease

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Help Needed Determining Source of Severe Pain

pstrambler profile image
9 Replies

I discovered that I have the Sickle Cell trait when entering military service. The condition never posted a problem in the past. I became conditioned to deal with severe pain as a chronic gout patient. However, over the past few years, I've had to endure a different type of pain that has the doctors that I've seen order numerous orthopedic, neurological and muscular tests that are all negative, so they're stumped. I'd appreciate any suggestions anyone may have from similar experiences or referrals that might help me. I've been hospitalized twice in the past year for several days each time on a morphine IV and fluids just to be able to bear laying there in the hospital bed.

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9 Replies
Daelynocr profile image
Daelynocr

For almost half of my life I was told that I had the trait until I became pregnant at 41 and had to take all the at risk test for mothers. The test came back negative. But during my childhood years there were things I couldn't do, like run for a long period of times, legs hurt right in the muscle part, blood count stayed low that I had to transfusion more than once. But I don't have sickle cell or the trait. The Dr. Told me that when I was told in the early 50s that the measuring scales were wrong and the people they were diagnosing with the trait were wrong. But anemia makes you weak and your bones hurt. Sometimes it seems we have to almost die before we can get help for our bodies . But I hope you can find someone to help I know the struggle you are enduring.

pstrambler profile image
pstrambler in reply to Daelynocr

Thank you!

Anzy profile image
Anzy

I am sorry that you are going through this pain and I hope you get better soon. I have sickle-cell anaemia but two of my siblings have the trait, and when they become sick for various reasons the sickle in their blood makes it worse. I think there is not enough research in the trait for Doctors to give definitive answers. The percentage of sickle-cells in people who have trait differs which is why you are most likely experiencing pain. I suggest staying warm, not exerting yourself unnecessarily and drinking alkaline water, which has worked wonders for me. Get well soon.

pstrambler profile image
pstrambler in reply to Anzy

Thank you. I'll try the alkaline water because I'm unable to walk today.

1rosebud profile image
1rosebud

Iam so sorry to hear of your pain. My brother and I have trait and he found out when he joined the military. He experienced mostly joint pain. I have a son that is SC and suffers a lot. I also have a grandson that is sA. He seems to be experiencing a lot of joint pain. The doctor told my daughter that people with trait feel no effects. if anyone out there knows of a good pediatrician in VA I would appreciate it! Stay well, and God bless.

pstrambler profile image
pstrambler in reply to 1rosebud

Good morning. Thank you for your reply. Doctor's are still trying to find the source of my pain other than gout. I do know a good Pediatrician in Washington DC: Dr. Marilyn Corder. Her husband is also a Pediatrician, but I worked with her.

Tawana45 profile image
Tawana45

Check out master Herbalist Patrick delves on youtube. Him and Dr.Sebi cured sickle cell in patients. Change your diet to fruits and veggies and start a alkaline plant based diet.

Luvnuallways profile image
Luvnuallways

I’m so sorry for your pain. Trait does crisis and it sounds like you have started to experience it at the unbearable level. Some of your ‘gout’ episodes may have been the beginnings of pain from trait. Every patient is different so just like in disease some start experiencing crisis earlier some later.

You may also have secondary blood disorders that potentiate trait. So make sure a hematologist checks for those.

My best advice is to stay very hydrated. Try moringa seed and tea, Noni by Only Natural Inc has the most concentrated Noni fruit, green herb ( many options. I like green vibrance which is at GNC Whole Foods etc)

Avoid stress, exertion, dehydration, altitudes, and extremes of temperature.

Slow graded increase of moderate to easy exercise at cool but not cold temperatures. Get your sleep. Sleep before the pain hits and it may decrease the episodes.

When all that fails you just have to go back to the hospital. Keep a good relationship with your doctors if you can. Show them the research and articles that confirm trait can get sick. Point out the Football player with trait who can’t play in Denver. He had crisis on the field. Trait like SS can be deadly. So rake your health seriously

Best regards to you. Love and peace.

pstrambler profile image
pstrambler in reply to Luvnuallways

Thank you so much. I was aware of the NFL player that had an episode on the field, but will Google. I have never been seen by a hematologist, but my rheumatologist gave me the name of one. My episodes always go away, they just return with avengance more often now that I'm older. I've given up much in the food & beverage categories.

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