Sst

[Myras03]

Hello there, up in the middle of the night experiencing trait symptoms, if I may say so. I read alot and I was also always told there are no symptoms with just the trait. I am 35 and surprisingly it wasnt until recently when I went for urology testing that tje uro dr. shed some light on my situation I wanted to share this information with all of you. First off, No you are not alone. I am here with you. MJ said it best. I thought I was crazy, pain off and on. Short of breath, kidney problems (although soda and I was best friends) but this is why I came on the site...MY DR. TOLD ME AS LONG AS I KEEP MYSELF HYDRATED I SHOULDNT FEEL ANY PAIN BUT WHEN A PERSON WITH SST GETS DEHYDTATED THAT HAVE SYMPTOMS LIKE THE DISEASE ITSELF. I ALSO LEARNED ABOUT OVER EXERTION WHEN WE ARE UP HIGH LIKE FLYING IN AN AIRPLANE CAN CAUSE ISSUES AS WELL!!!! So me being a heavy soda drinker had to find this out the hard way. My red cells wasnt getting the nutrients needed because of my lack of water intake and it caused a very alarminh crisis which could lead to "Slaughed Papillar" hint sst (one cause)

[twyishawalker]

Hello, my name is Twyisha Walker. I also have the Sickle Cell Trait. Just like everyone else I been told that anyone with the trait do not have symptoms. I'm 32 and I been dealing with pain throughout my body ever since I was younger. The last two nights now I been in real bad body pain. Sometime it have me feeling like I'm paralyzed when the pain hit me in my back. The pain get bad at times, so bad that I have a high fever. I remember going to the emergency room and having them tell me they didn't know what's going on with me. They can't figure out why I will be having body pains with just the sickle cell trait. I told the doctor I've been dealing with body pain every since I was younger. He told me there's no way I have. No one should have to suffer this way! We should not be told that having sickle cell trait do not have symptoms, because it does!

[321Peace21 in reply to twyishawalker]

So True Twyisha Walker that We with Sickle cell Trait shouldn't be told it doesn't have symptoms because it does. I feel your pain I have also suffered symptoms from Sickle cell trait. I still deal with my oxygen not always being at a good level so I am put on oxygen. I was also told I would not have problems with sickle cell trait but that happened to be a lie because I had low hemoglobin and I was in the hospital for six days while there I was told I wasn't having a Sickle Cell crisis but after learning I was experiencing an sickle crisis I had pain in my chest leg and arm I was out done an outrage that doctors and Physicians lied to me that whole time. Don't give up hope I am still searching for a doctor who understands what I'm going through. I hope you too find a doctor who will listen and understands what you are going through. There are so many symptoms with the Sickle Cell trait that aren't talked about not only the low hemoglobin but splenic in fraction and many others like blood in urine, I was reading stories of some of those with Sickle cell Trait had to have blood transfusions so not just those with Sickle cell disease had blood transfusions. There definitely needs to be more Awareness on the Sickle Cell Trait and the symptoms that can occur because of the disease.

[Yvonny]

I am a 38 year old woman and I have heamoglobin C trait throughout my childhood until now I have suffered from generalized joint pains. I go to the emergency room at least once a month because of pain flare-ups. The only way the flare-ups get resolved is with IV fluids and pain medications. I presently have to deal with joint pains and high heart rates with diarrhea every morning. I take 100 mg of tramadol and sometimes 200mg of Celebrex to help me get some relieve from the pain. Initially I was told I have sickle cell-like crises and then whenever I went to the ER and mentioned this, I was told I have chronic pain and not sickle cell and then I will not be taken care off appropriately. Sometimes I end up having to beg for IV fluids which I will be given only on condition that they find a vein but if not, I am left to go with my pain. I have been frustrated several times that I am scared to go to the ER. When my drugs are not working? I cry myself to sleep. They say I have some elevations in the pleural cavity of my lungs and when they did a CT controlled biopsy, the found dead red blood cells. They said this usually occur in people with sickle cell disease. I have been investigated extensively for connective tissue disease disorders because my ACE is about 2 times higher than the normal range and all my markers are borderline and so my rheumatologist does not think I have any connective tissue disease. I have been to pain management programs and nothing has changed. Most of the times I wait until the pain gets very bad and my pulse rate gets so high and my blood pressure drops before I venture the ER because it is only under such a condition that I will not be denied pain medications and IV fluids. Hmmm, it's been a very frustrating journey for me and I'm glad that I'm not alone. I think that some people with hamoglobinopathies are suffering very much. My sister has the same condition as me and she is suffering too. Today I went to the ER with hip, knee and ankle pains because l could barely walk but I was given toradol and Tylenol or paracetamol and sent away still having pain. I knew it was gradually going to get worse and then someone may need to take me there when I cannot breath so my PA, a kind hearted lady, advised me to go the the ER no matter what and she even called them before I went but the doctor on duty told me that I have haemoglobin C trait and not sickle cell and that my pain is not clinically indicated. I begged to be given IV fluids but I wasn't given because the IV line that was set for me initially did not work so they would not set another under the pretext that it is not clinically indicated. I am trying hard to ignore the pain right now but I still having it and I cannot sleep. I took my regular pain medications which are tramadol and Celebrex and I feel a bit better but I still have pain and I feel quiet light-headed too and I cannot sleep. We need to come together and speak out before they allow some theory they have come to believe as the norm and wholistic to ruin us.

[321Peace21 in reply to Yvonny]

Yes We need to speak out. Sorry to hear they defined you IV fluids. I will pray for you Together we stand. It wasn't right what the doctors/ physicians do to you,God but is Bigger. I gone through so much with this sickle cell trait and I am still having a lot of chest pain and problems with oxygen levels and I refuse to let doctors silenced me. God is Bigger than what I am going through. I hope things work out for you. It is truly sad that doctors would be inhumane and insincere towards their patients but we will not back down we know are bodies better than they know are bodies. Keep on Pressing on.

[321Peace21]

Hi Myra thanks for good advice. I have also heard being dehydrated can cause problems with Sickle cell and lead to crisis. I make sure I drink lots of water because it is important that us with Sickle cell Trait or this blood Disorder stay hydrated and get the proper sleep because symptoms can leave in feeling exhausted. You are so right about flying causing problems it can also cause hematuria and crisis. I don't fly because of these reasons. Hang in there you are a Warrior. You have been through a lot but you still here, you are a sickle cell warrior and an Warrior who endured complications from trait just I have endured symptoms from trait. Everyone on this thread is A Warrior.