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Joint Pain in Thalassemia

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Offline Andy Battaglia

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Joint Pain in Thalassemia
« on: April 01, 2006, 08:46:45 PM »
I've been talking to my one of my Maldivian friends and he told me he has been suffering from joint pain in his knees and ankles. He is not using L1 so it is not related to that. He gets swelling with the pain. His ferritin is in the 2000's and he keeps his Hb at least at 8. He doesn't believe it is arthritis.

Has anyone else experienced joint pain like this? If so, do you know the cause and what can one do to alleviate the pain? If you have any comments on this please respond.

Thanks

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Offline Smurfette

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Re: Joint Pain in Thalassemia
« Reply #1 on: April 02, 2006, 04:01:43 AM »
Hi Andy,

I am not sure on the cause, but it could be desferal related as well..Not being 100% sure...

I have had some knee pain in the past but that has gone...He should get it checked out like have some X-rays done...

To alleviate the pain, try some ice packs, or a heat rub might help...He can try and take some glucossamine and condroiton capsules..which will help build the cartlidge and heal the knee...

Well thats all I can say for now...Hope this helps..

Regards
Smurfette
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Offline Bharat

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Re: Joint Pain in Thalassemia
« Reply #2 on: April 02, 2006, 04:53:55 AM »
Hi Andy
My wife has joint pains in her wrists and her legs hurt sometimes. Doctor said there is nothing that can be done and asked her to take Ibuprofen. He also insists on her taking a small dose of asprin to avoid bloo clots.

Thanks
Bharat
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Offline §ãJ¡Ð ساجد

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Re: Joint Pain in Thalassemia
« Reply #3 on: April 02, 2006, 05:14:12 AM »
Well, I had a history of this too. My doctors in Saudi Arab were unable to relate it to Thal. but one wise doctor had a hunch that I might be allergic to some food and recomended to find out. Strange thing happened as I had to be hospitalised longer due to these severe pains that I automatically recoverd.

Then my mom found out that I had not been taking the milk that comes preserved in the carbord brick packs since I was hospitalised while I took it regularly at home. She was right as it was that preservative chemical in them that I was allergic to.

When I got home I remained fine for a few days, but when my mom tried that milk again, my ankels and knees started to hurt again. So she stoped it from that point on.

She shifted me to the powdered dried milk(Instant milk) that has to be dissolved in water; as fresh milk was not available in Saudi Arab. It is available here in Pakistan but the milk men are no longer honest and add water to increase the sales. So now even here we are on the instant milk even though it is way lot expensive than the milk men one(I won' t say it fresh milk as it no longer contains fresh milk :wink Though I would say it contains LOT of fresh water!!  :rotfl)

By the way I am fine ever since I shifted to the instant milk.
All right! This post will earn me my next STAR!! Now I am in the same league as Poirot!!. I feel gRR8!
« Last Edit: April 02, 2006, 05:17:18 AM by Sajid Rauf »
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Offline Andy Battaglia

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Re: Joint Pain in Thalassemia
« Reply #4 on: April 02, 2006, 05:21:36 AM »
Congrats on the star Sajid.   :thumbsup

 I was glad to hear you were feeling better after your Hb got back up.
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Offline Smurfette

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Re: Joint Pain in Thalassemia
« Reply #5 on: April 02, 2006, 05:28:41 AM »
Hi Bharat

Ibuprofen is good....but if your wife has stomach problems its not so good for it...Also doctors dont ask you if your are allergic to asprin either, cause Ibuprofen is in the same family as aprin and some people cannot take either of them...

If your an asthmatic you have to be careful of taking ibuprofen and asprin, cause it can bring on a asthma attack if not careful and you dont want to have any other problems..

Also it can cause stomach ulcers if not taken properly...Take it after food and with plenty of water...
If it upsets your wifes stomach, I would suggest she stop taking it....Cause she doesnt want any other problems..

Paracetamol is good, but not effective as the Ibuprofen, thats if you can take it....

Hope this helps...

Smurfette
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Offline Eponine

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Re: Joint Pain in Thalassemia
« Reply #6 on: April 02, 2006, 10:56:35 AM »
Hi.

I do not claim to have joint pains and all, but I do have weak knees, especially when I do vigorous sports like running, aerobics or kickboxing and stuff like that. I have never linked it to being a thalassaemia before reading this post. I have always thought that I had weak knees. My solution to that is to minimise the activities that puts pressure on the knees. It's much better now though the problem comes back the minute I conduct strenous exercises.

I think the problem with joint pains can also be linked to osteoporosis? I know I am a little, but am not taking regular calcium tablets. (too many pills to pop!!) I try to get it through diet. Those with joint pains, have you gone for a bone scan?
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kathy10

Re: Joint Pain in Thalassemia
« Reply #7 on: April 02, 2006, 11:15:24 AM »
hi Andy.
In regards to joints pain.I have osteoarthritis in both knees and I suffer  intermittently with severe bones pain at a point in time, I thought I had bone cancer .The pain is excuciating especially on a cold winter night.Aches and pains are my company.Luckily ,I  take some  alnagesics and this diminish pain.
Such is life for me.
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Offline §ãJ¡Ð ساجد

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Re: Joint Pain in Thalassemia
« Reply #8 on: April 02, 2006, 11:37:09 AM »
I guess this settles it that joint pains are not related to Thal. we all had different reasons for our pains. Furthermore I think it one of most common and neglected physical problem even with normal people. I being a muslim hear a lot of people's bones and joints crackle and pop in the mosque during the prayers which require quite a lot of movement.  :wink

People just don't take much calcium in their diet anymore. Even me, I am off the daily glass of milk which my mom forced me to drink as a kid; ever since I turned got into my teens.

By the way thanks for the compliment, Captain Thal. Care  :yahoo
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Offline Smurfette

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Re: Joint Pain in Thalassemia
« Reply #9 on: April 02, 2006, 11:47:52 AM »
Hello to all,

If you have joint pains in the knees it not linked with osteoperosis, you will know weather you have fractured your bone if you have osteo its not pleasant for I have had such trauma fracturing my T12 from sneezing and I tolerated the pain for 3 weeks prior doing anything about it...I thought it was just a sore back, like we all get...

The knees are probably sore maybe cause of vigorous excersice, or there is some kind of arthritis forming there, and that can be painful as well..I know from my mother who has osteoarthritis and reumatoid arthritis...

Now  in taking calciium supplements is a good thing, but you have to remember that not all calcium is absorbed by your body...There are some people whos body doenst absorb any calcium no matter how much milk, yogurt, cheese and how ever many tablets they take...

Its just one of those things that happens..

I aggree with Sajid in what he says about people's bones crackling it does happen...Mine do crack all the time and its a normal thing...

Kathy10 I know how you feel in the cold on a winters day..my mother suffers too and i cant help her either....Its hard I know....

Hope this helps you all..

Take care
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Offline Poirot

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Re: Joint Pain in Thalassemia
« Reply #10 on: April 02, 2006, 05:05:24 PM »
RE: joint pains, without use of L1 - some pointers:

  • As Smurfette/Kathy pointed out earlier, you want to rule out osteo
  • You want to check out fluid retention in the knees - could be due to desferal, or excess salt in the diet
  • I don't know about food allergies causing such a reaction, never heard of this before. Sajid, did you figure out what was the additive in the milk? BTW, freeze-dried milk powder is not good for your stomach/bowels. Given the limited food value of milk powder, you may want to consider giving it up altogether
  • Finally, you may want to look at tea/Vitamin E as an anti-oxidant, in case it is some "free radicals" causing the mischief

Cheers
 
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Offline §ãJ¡Ð ساجد

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Re: Joint Pain in Thalassemia
« Reply #11 on: April 03, 2006, 11:22:32 AM »
Yes it was the preservative chemical that I was allergic to as only the packs marked "Long Life" caused it while the regular one that has the shelf life of few months is O.K as it is the only kind of packed milk available here in Pakistan and I use it with no problem. The "Long life" packs were in Saudi Arab where I had that horrible pain experience.

As for the powdered instant milk, it's the regular one that is quite easily available. (I am talking about "NIDO" etc)
« Last Edit: April 04, 2006, 07:46:16 AM by Sajid Rauf »
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Offline Bharat

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Re: Joint Pain in Thalassemia
« Reply #12 on: April 03, 2006, 06:45:45 PM »
Hi All
Got to check with our doc again. He said the aches were because of the Thal. Thanks Smurfette. Will talk to doc about asprin. She is also on Fosomax but the aches were there before she started the Fosomax.

Regards
Bharat






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Offline Poirot

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Re: Joint Pain in Thalassemia
« Reply #13 on: April 04, 2006, 09:20:33 AM »
Quote from: Sajid Rauf on April 03, 2006, 11:22:32 AM
As for the powdered instant milk, it's the regular one that is quite easily available. (I am talking about "NIDO" etc)

Yes, you may want to reconsider having the powdered, "instant milk" ... a more appropriate name would probably be "dessicated milk, robbed of all its goodness, with added chemicals to boot"! If you are "drinking" this stuff regularly, instead of just using it as a dairy whitener, I can not emphasise enough how bad it is for your digestive system. It can cause symptoms ranging from constipation to ulcers ....

If you can not trust the "fresh milk" quality raw, try boiling it (to 100 deg) ..... even if diluted with water, it is better than the "instant" variety.

My 2 bits.

Poirot
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Offline §ãJ¡Ð ساجد

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Re: Joint Pain in Thalassemia
« Reply #14 on: April 04, 2006, 11:02:21 AM »
I totaly agree with you, Poirot!

When I drink this instant milk regularly I get loose bowels! But when I use it just as a dairy whitener, it doesn't do any harm.

Compared to fresh one, the regular packed milk is better as the milk men come from villages far away and they also add chemicals to their milk when they bring it to the city, because the temperature and sun exposure is too high on their bikes while on their journey from their villages to the city.

We can say that the multinational companies follow strict quality and hygiene codes in the manufacture of their packed milk. So, I guess this is the one for me after checking that it's not marked "Long Life" if I ever have to drink milk.
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