One discussion asked if other family members had Fibro which got me thinking about what conditions or diseases run in my family. One stuck out, sickle cell. An aunt and an uncle suffer from it. As a child i suffered from pain all the time and when my mom took me to the doctor, they never gave a reason. A few yrs back during some blood tests the doc told me I had a rare sickle cell trait called christiansborg. I blew it off because I knew my family had it and he said it wasn't active or something like that I left it alone but when i think about it, my arms and legs get the worst of my pain and no doc can explain why my arms and legs hurt the way they do and differently from the fibro. I don't have RA or any type of it, no carpal tunnel, nothing but this lingering trait. Sickle cell can be mild and cause joint, muscle and bone pain. It causes pain in BOTH arms and legs...shoulders and chest. . .I am curious now. I can't believe this just hit me. . .there isn't much info of christainsborg online besides some pdf's from the 70's in medical jargan that i don't understand nor have the patience to read. .but I will do more research and requests some tests. My mother always was afraid that I had sickle cell with the pain I went through as a kid. . .hmm. . . .I shall keep you posted.
Is sickle-cell an auto-immune disease? So are you saying you might not have fibro, but sickle-cell might be the cause of your pain? That would be great if you only had 1 disease instead of 2. I don't know everything about it, I just know that it comes in attacks/flares. Does it also cause the constanty pain that people with fibro have?
The last will perhaps be your best link, it even discusses this as a childhood disease. Surely you know I am out of my depths here, but there is so much info in the net for further research.
Hope this helps you, and that you can have some health and some peace.
Hugs to you,
I think it's definitely a line worth pursuing, especially since fibro seems to run more in Caucasians than Blacks, whereas Sickle Cell is the opposite. And is it definite that yours is Christiansborg or could it be the more active kind? I really think you need to visit a knowledgeable doctor to discuss the matter in depth.
I hope you can get some definitive answers. It's good that you've come here and started thinking about your family history and how it impacts you. You may now get an answer to what's going on with you. Fingers crossed.
Yep thats my idea. although i read online that sickle cell and fibro share common issues. My aunt and uncle experience a lot of pain with their sickle cell as well.
It is definite that its Christiansborg. I will explore it all much more now. I have not experienced the sickle cell like my aunt and uncle but Christiansborg is not what they have, its Haemoglobin OSU-Christainsborg a beta-chain variant of haemoglobin A and when combined with haemoglobin S behaves like sickle cell trait AS (which is what my aunt and uncle have).
We surely do not wish you to be ill, but knowing what is making you ill is a huge relief.
From what I have learned so far, today, christiansborg is a sickle cell disease and not anemia which are different and varies in severity. Sickle patients can get a trait A, S or C from their parents to give a phenotype and determine anemia or the disease trait. A child can inherit, AS, SS, SC, AA, or AC. . ACHEACHE (as Dr. Ahulu calls it-phenotype SS) means the child received on S gene from mother and from father and is sickle cell anaemia . . . . . .Christiansborg is SOsu-Christainsborg and it's its own phenotype. I do not know the traits I inherited from which parent or the severity of this trait but I emailed the london doctor Felix Konotey-Ahulu who studies sickle cell and has written numerous books on the matter. His book also explains the phenotype christiansborg in detail so I think I may find this book.
small steps. . .
I am going to visit family next week so I may call my aunt and uncle and ask them a few questions about it. .
Well it looks like you're well educated on the matter and getting the right tools to learn more with. I think it's wise of you to hunt down the book about Christiansborg as well as to speak with your relatives. They could be at treasure trove of information. Good luck in your search for the truth.