Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: PositiveVibes on November 02, 2014, 07:57:16 AM
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Hey Guys..
I believe this was raised as a question before but I couldn't find related info... and decided to drop you a few lines as at the moment I'm really suffering from severe loweback pain.....
It's again the week in which I have to go for for a BT and I almost can't move... I have strong spine spams and unbearable lowerback pain which almost paralyse me... I try taking higher dose of calcium ( in case it's due to my osteoporosis) and painkillers but this doesn't help.. I basically don't know what to do !
The worst is that I am not sure what really causes the problem (maybe there's a correlation with pre-transfusion hb or hemolysis but I don't really expect my hb to be very low )..
Please let me know if any of you suffer from the same and what do u usually do ?
Thanks!
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Hey Rozitka,
I got usualy the same Problem before Transfusion. I think it's related to bonemarow and its, lets say, "overstraining". The older I get the often i got it...
Fortunately i can say that Aspirin does work for me. What painkiller do you use for it?
I think that in that Case Aspirin is more usefull because of its vascular Enhancements.
Annyways
Youre Not allone...
Take care.
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Thanks Nomad, i take paracetamol and Upsarin (which is like aspirin) and it helps but a bit.
Does it have any relation with the level of hb? In other words do u have the pain only when the hb is low or it doesnt matter...
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Yes indeed. It does depent ob the HB Level. The lower it get the more pain you get.
It is like an oedemia in the marow that is caused by its overastraining and so on.... When I got it, it goes straight from My knees to My back up through my spine to My teeths and skull
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Upsarin?! never heard of it.
Where Do you Come from? Which Country Do you live?
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Hi Roz,
The pain is almost certainly caused by the low Hb level. How low does your Hb get before transfusion?
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Thanks for ur replies. I usually keep it around 9.5 and i don't always have this pain. It's weird because i was so much in pain yesterday and the day before while today i feel almost no pain... (Although i know my hb keeps dropping mot increasing lol).. I assume I might have had a very strong hemolysis .. Which makes me wonder whether there's s.th i could do about it at all ( something i can take and kind of stop it/ work against it ) :)
Thanks again for you consideration.
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Hi all!
Does anyone have any more information about lower back pains?
My eldest, 22yrs old, has been having really bad lower back pain since Tuesday night.
Usually happens at night. It gets to the point that he finds it difficult to breath, so quite severe. It lasts for about 4/5 hours. This has happened before about 2 years ago and just sort of happened now. His Hb has been low before but he did not have back pains then.
His calcium and Vit D levels are normal. Ferritin normal, 500/just under.
Why could this be happening?
Emby
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Hi Emby,
How low is his Hb allowed to drop before transfusion?
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Hello Andy,
It averages at about 9. the last time it was 9.7 but has been about 8.9 a few times.
He hasn't had back pains in a quite a while even when his Hb was low.
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Wow,
I am not alone. Yes I get that too, before 5-7 days of transfusion. It does not strike maybe 2/10 times but otherwise I experience the same almost every time. I had to explain my dad that its not something in my mind, it happens because of low Hb near the transfusion days.
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It's almost always caused by low Hb and usually observed in the week preceding transfusion. I'm among those who would like to see all patients kept above an Hb of 10 at all times. I think we'd hear far fewer complaints about back pain and bone pain in general.
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Hi Andy,
Yes I try to keep my Hb above 9.5 every time. Its the borderline around when the pain begins. Earlier I was transfusing at 20-21 days but recently around 16-17 days to counter with any potential pain.
As for Emby,
Dear, don't worry. That pain I can confirm is associated with low Hb. Last month, I was wreathing in severe pain too (couldn't breathe like you said, severe back pain, back of the head region paining and it was appearing as if the bones went out brittle) and next day were my exams! I had to take 2 painkillers to be able to attend the exams and reduce the pain. When I was transfused that evening, I woke up next day with no pain since my Hb rose up and I felt better.
So the only solution and advice as Andy has stated, is to try to maintain Hb levels around 9.5 - 10.
Best,
-P
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I hope you got through your exam ok :'( . It happened that way to my son too a while back. I was so upset for him. Don't want to see him in pain.....you just bought back that memory. He sat through the exam in unbearable pain. He takes pain killers too but says it does not really help.
Thank you for sharing...I pray you all remain pain free.
Emby.