severe cramping in the stomach, unexplained fatigue, dizziness, problems with high altitudes, motion sickness.
I think that the Sickle Cell Society should stop putting everyone in the box. They also need to update the information on people with Sickle Cell Trait. So much info on the disease and they are still telling people that the trait does not produce symptoms this is not true.
I have met a lady in the day unit I go to for pain relief who had the trait and still required pain relief and transfusion. I guess because its quite rare that's why its not taken seriously. my parents are both carriers, but my mum gets tired a lot. I guess just like sickle cell patients have varying degrees of seriousness so also does the trait.
Do you have pain in legs and feet with swelling to the feet
Sorry just seeing your reply @nettevaw, I have sickle cell disease not the trait so I have loads of sickle cell pain. Do you have the trait?
thanks for the response. I have never thought about it like that, it is true for years well my whole life I have had
un-explained bouts of pain, and discomfort. I still get motion sickness, and I have been having pins and needles pain sensation in my upper thighs for years off and on and now I believe that it is due to the Sickle Cell trait. I will bring this up with my present doctor.
I have only trait. And just went though a very difficult pregnancy I had such severe pain I was in the hospital for 2 months. Pain shortness of breathe anemia with hemoglobin down to 10 weakness fatigue sharp pains in my rib bones and calf bones the doctors didn't believe it was trait but they treated my pain and let me have oxygen and fluids. All I which. Helped. They couldn't discharge me until I had the baby bc my blood pressures stayed very high with the pain but would drop low when the pain was controlled. But this wouldn't last long and my pressures would shoot up to stroke levels. And blood pressure medicine didnt work bc of how low I would go when the pain would subside say for a day or a few hours. They did an MRI which showed the sickle changes in my back bone. But they still refused to believe my symptoms were bc of sickle
cell. Sometimes they treated me like a drug addict but that didn't make sense for them either bc I would only use the bare minimum of the medicine they made available just to not be in screaming agony. They would threaten me that th baby was going to come out with all sorts of problem but with a lot of pray she came out screaming and healthy although I had to deliver a bit early so she a little trouble nursing but that was it. I do have a hematologist that treats me in day clinic but she doesn't have privileges at the hospital I was admitted to so it was a nightmare. But fortunately we are both ok now. I had to figure out for myself how to wean down from the meds and transition to gabapentin which helps the pain a lot. But I feel much better now that she is born. I'm not having the kind of pain and other symptom to the extent I had them when I was pregnant. We all just have to keep talking until someone finally listens. Thank you for your post
I am so happy that you and your baby are doing well. My cousin had Sickle Cell Disease and he died at age 55. Some of the symptoms that I am reading here and the ones that I have sounds very much like the disease only not as severe. We will continue to discuss our symptoms and get the right person to listen and act on our behalf.
Yes. That's what we have to do. There is so much that is not known yet
I also have trait and been sick for the past fee years. I also been diagnoses with low vitamind b12 and d. So i am wondering if it is common ammong others who has trait
On some other forums I've been on lots of carriers have found they have low iron levels.
In my case I was found to have low vitamin D, iron and b12 levels last year.
It took 9 months for someone to listen to me about my vitamin D symptoms and in the process the other symptoms which I had been complaining about for 4 years were uncovered.
I've come to the conclusion certain NHS GPs are not only closed minded but racist and sexist as well. One GP went as far to tell me I was making things up, wasting NHS resources and his time. I complained about him but unfortunately I didn't have a witness so my complaint was ignored. Every time some one listens to me they are female and from certain ethnic backgrounds.
I'm now with new doctors and refuse to see any male ones to decrease the risk of problems.
Oh when you have operations under GA in London or any major UK city they have been told to check Black patients aren't sickle cell carriers. This was not done for me and the anaesthetic doctor was shocked when I told HER. Luckily I donated blood for 7 years otherwise I wouldn't have known and the operation would have been cancelled.
Im 45 and i have the trait and recently i been having spots of pain in my right leg as well as leg swelling numbness and my hemoglobin numbers are never consistent. My qualify of life is work and then home and on the weekends I basically just rest because I'm in the medical field so I suffer through it Monday through Friday and then I spend my weekend resting but there has to be something better than this because I'm too young to feel like an old person. Ive been in car accidents so i alo deal wih back pain. But talking to a doctor about legitimate pain is such a hassle unnecessarily because they make you feel guilty for no reason. But no one knows how i feel after standing 10 minutes walking in a grocery store and forcing myself to do normal things like walking but my legs are on fire to where im slouched over and i havent realized it.
I too am in the medical field and moved to Denver, CO four years ago. Six months after settling in, I had an emergency abdominal surgery because of crazy pain after my shift one day that got increasingly worse; then after returning to work, after pretending to be ok on the floor, I ended up with more intense leg/hip pain which led to multiple spine surgeries plus a shoulder surgery. I’m still on LTD and have been out of work for 3 years.
I do believe this is sickle cell trait in full effect. I’m only 50 and was previously very active. Doctors really need to educate themselves so they can properly educate us. Until then, I’ll keep doing my own research.
Oh my goodness I can so relate to this.
I have so much lower back pain and pain down my legs there are days when I feel my legs will give out on me.
I too was very active and health conscious when I was younger. I am now only 50 and I feel like I am 101 with all the aches and pains I have. I have been experiencing pain for about 20 years and have taken all sorts of pain meds that have not helped. I had a doctor diagnose me as having fibromyalgia only because he was frustrated of my coming back so often.
I am also a survivor of 13 years of incest and sexual abuse so most doctors say my pain is psychosomatic. I have had steroid injections in my lower back shoulder and elbow for pain. Today I read that body aches may be a result of folic acid deficiency. This made me think perhaps my pain could be a result of sickle cell trait.
I am getting rotator cuff surgery in 3 weeks
A pain specialist plans to burn the nerves in my lower back since I have had several steroid injections. But what is the source of my pain. why don't they want to find out what is causing it Grrrrr
I too work during the week, up at 4am home at 730pm, and rest on weekends just to make it thru the next week. Pain is like yours, back and legs, and fatigue. Can related to grocery store story. I am to the point of retiring early because I have no quality of life.
I have an 11 year old daughter with the sickle cell trait and she has been complaining lately of fatigue, dizziness, motion sickness and stomach pains.
Yes exactly. I am a mother of a boy who has sickle cell trait plus alpha thallaseamia which is rare? Recently diagnosed,,,these posts have helped as I have been struggling to find answers as the drs ones don't match my sons symptoms
Me as well. Please let me know what you find out. My doctor just blows it off.
My son has sickle cell trait and tires so easily, has frequent indigestion problems and dehydrates during illness incredibly quick, last time he got sick after vomiting a few times almost went into a metabolic acidosis, even after he was already at the hospital getting treatment. At school they complain cause he goes a lot to the bathroom but he drinks a lot of water cause he is always thirsty. I agree that there has to be more symptoms and the phrasing "in rare cases" fot SCT has to be eliminated. you look up information in rare cases sudden death, that's no rare that's alarming
Yes definitely the sudden death connected to SCT is extremely alarming and I am seeking more knowledge and understanding.help please
I am very happy to find that others around the world are experiencing things that i experience as well being a carrier of the sickle cell trait. This idea that they have come up with that "in rare cases carriers have symptoms" is totally untrue. My symptoms are low iron levels, fatigue, and muscele pain. I also notice that when i get cold its unreal, i literatly shake like im having convulsions and my hands turn white this happens randomly even if its like 60 degrees outside!
I get the chills down to my bones when the weather changes.
You're right. I too have sickle cell trait. Maybe if a lot of people contact them, they can do more research. I get muscle and joint pain in my legs, stomach cramps and tire easily. If we have a Facebook page and probably generate some noise, maybe they will be willing to assist us.
Thank you so much for sharing this. I have sickle cell traits and have been feeling extreme bouts of fatigue since my early 30s. I am now 44 and I am constantly tired . Latelly the doc told me my iron levels were low and also low on vitamin D. To make it worse I am
Having periods every 21 days and so my iron levels are not too great. My moods recently have been also low and most docs in South Africa where I live suggest that I should not have any symptoms from this . I am glad to know that after all I have not been mad when I tell them I do not feel well.
My question to those of you who have the trait and generally well are as follows :
1 . Is there any one who knows of a good doctor that I can see in SA who understands this .
2. What supplements do you take to feel better .
3. What kind of exercises would you recommend ?
4. Do I need to have blood transfusion if I continue to feel unwell ?
Your symptoms sound very, very similar to mine. Low iron, low vitamin D, heavy periods every three weeks. Mood swings, depression and constant fatigue. For years I was made to feel that I was a hypochondriac. I now have a Nigerian GP who has listened to my concerns. I am taking folic acid, iron and vitamin D. I have also started taking Evenflo and slowly but surely am starting to feel better.
I am 12 years old and I was told I had sickle cell trait a few days ago due to a blood test I took. I thought this explained alot of the things that have happened to me my whole life, but I was shocked to find out my doctors tell me it came with no symptoms. I could not believe them because I know for a fact I am not the only one with sickle cell trait that suffers from unexplained fatigue and motion sickness whenever I ride a car and get unbareable pain that comes and goes in my lower right thigh at the worst times. Just because I only have the trait and not the disease my doctors seem to forget I have sickle cell anemia.
Wow. This feed is so helpful. I have sickle cell trait and have had a cold every 6 weeks for the past 6 months. I am always tired, have always had cold feet and hands and had aches in my legs and knees. My GP looked at me strange when I mentioned I had sickle cell trait (my mum is dual heritage and dad white) although it’s been my surgery since birth and asked if there was a link....maybe low iron. She was quite dismissive but I spoke with a nurse today who said I must demand a blood test to see if it is low iron and/or vitamin d. By reading this thread, I now know all these years I’ve been right! SCT does give people symptoms. Thank you to all the commenters.
I NEED HELP I HAVE SICKLE CELL TRAIT AND I NEED HELP I HAVE BEEN GOING TO TO THE RESTROOM ALL DAY AND NIGHT
Yes agree the Sickle Cell Society needs to stop putting those with the trait in an box because more and more people are having symptoms because sickle cell trait is an blood disorder it does come with symptoms and each person could experience different problems and symptoms at anytime. Everyone with trait may not have the same symptoms but so many do have an sickle cell crisis. The Sickle Cell Society should do more research and ask those with the trait what have been the problems or complications from trait they have faced. The sickle cell society also should be more open minded to those with trait.
My husband and I knew there was a chance of our baby having sickle cell, since we found out she has it, I have found it hard.
Crisis but only sickle cell trait?