Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: Andy Battaglia on April 01, 2006, 08:46:45 PM
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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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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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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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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!
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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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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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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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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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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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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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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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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)
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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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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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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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Hi All,
I have terrible knee and entire leg pain. I have had so much pain all over my body over the years that I was diagnosed with fibromyalgia back in the 70's. I was also a non-transfused thal intermedia for 51 years, and much of the time had low hemoglobin levels. I think a lot of the pain was from overactive bone marrow and low hemoglobin levels.
I have had surgery on my left knee in 1984, and the last few years it has been very painful on and off. My left ankle will also swell at times and it is painful to walk. Many times my leg and hip bones feel like they are burning. Does anyone have this? I know I have some arthritis, but I think thal is causing some of the pain.
Has anyone with intermedia had this condition: burning leg, foot, ankle, hip pain, and leg cramps at night? When this condition gets really bad, I sometimes go through a period of rapid weight loss over 3-5 days, and difficulty getting enough hydration. It seems like my body is literally burning itself up. I think it has something to do with overactive bone marrow, but I have been transfused regularly since 2003. It also occurs with low grade fever, so maybe I have a virus at these times. I have been sick with this for the last 4 days and I have been going crazy!
Any input is welcome. Thanks, Jean
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Well, I am really sorry to hear what you are going through! I pray Allmighty God to revive you from all the pain and suffering! Amen!
I also get cramps and burning feet in the summer nights! I know how you feel. It is a really bad experience!
The cramps occur when HB is low and you are dehydrated. Blood is not sufficient to supply oxygen in the required amount and the muscles get cramped easily when you are dehydrated!
Drink lots of water with palatable electrolyte salts added to it ( called oral rehydration salts O.R.S here in Pakistan and easily available in all general stores).
If O.R.S is not available then a yummy alternative is Lemonade :yum Although it will have less variety of electrolytes in it than ORS but will do a fine job fighting cramps.
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Hello All,
Can I suggest something that cramps are probably not because of a low Hb...Its probably you have a low magnesium level in your diet.....
If you take Calcium and Magnesium tablets that should aleviate the cramps and the pain...
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Thanks for the replies.
Sajid, thanks for the concern and the idea of taking electrolytes - I am going to try it! Smurfette -thanks also, but I do take daily calcuium/magnesium pills. I had not used Desferal for 3 days when I was sick, then I used it last night and my left knee started to hurt again. Maybe it is the Desferal? I usually use it 5 nights a week. I will have to look at my old info. on Desferal. Thanks again, Jean
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I am not sure whether you should take ORS with Magnesium and Calcium pills as it will cause excess of these metals, because ORS contains the salts of these metals too; in form of Magnesium Chloride(MgCl2) and Calcium Chloride(CaCl2). Doctors recommend ORS because it has a variety of salts as the table salt we use is only Sodium Chloride(NaCl). Although these are water soluble and excsess of them get screated away eaisily, but I remember my old Chemistry class that these salts get ionized(break away from Chlorine and become free metal ion radicals) once dissolved. So I am not sure whether its the salts that get easily secreated or the ions!
Anyone? Who would like to clear my confusion? :huh
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hello all
the calcium and magnesium tablets should be taken at least 2 hours after desferal or a few hours before you go to use your pump...You are more likely to get better results that way...
Its not recommened to take it while doing your desferal...Cause as we all know that desferal depletes calcium from our bones....
Sajid your knee problems could be from the desferal...You might have to ask your doctor and see what other ways you can have your desferal without the painful knees...
Hope this helps...
Take care.
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Thanks, Smufette and Sajid. I didn't think about when I take my calcium - good idea. I am going to get a scan of my knee and see if anything is wrong that way, then I will address the possible Desferal issue. Take care, Jean
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Dear Jean,
I am glad to be of help to you..
I just got the best news today from my Bone Specialist!!! We got my results from my bone scan and it showed that my bone density is back to normal...NO MORE PAMIDRONATE FOR ME...
:yahoo :yahoo :yahoo :yahoo :yahoo
:cheer :cheer :cheer :cheer :party :party :party
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I just got the best news today from my Bone Specialist!!! We got my results from my bone scan and it showed that my bone density is back to normal...NO MORE PAMIDRONATE FOR ME...
:yahoo :yahoo :yahoo :yahoo :yahoo
:cheer :cheer :cheer :cheer :party :party :party
That's a great news!
Wishing you all the happiness and best of health! :woot :clap
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To Sajid,
Thank you so much for your kind words...It hasnt been easy but I did it...The trick is to take care of yourself and do abit of swimming, light exercise at the gym which I have been doing the last few years...Doing what my doctors says...( Well not always ) But it does pay off...
I will be seeing him now every 1-2 yrs so I am grateful for that..
Take care all..
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Smurfette,
What is pamidronate, and how bad was your bone density? I have osteopenia and may have to start on something soon. I was swimming during the summer, but quit when I started back to work in August, (I'm a teacher). I am so tired when I get home from work that I don't do any exercise, but I know it is so important to do something.
I am really glad you are doing better! Good job. Jean
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Hello Jean,
Pamidronate is given IV for people who cant tolerate Fosamax or Actonel...They are tablets that help in the growth of bone mass...
Pamidronate does the same it promotes growth in the bones....
My bone density was pretty poor, I have had a fracture of the T12 in my spine, and that was pretty painful I can tell you that....I was on pamidronate for 4 yrs to the date!!! I had the infusion every 3 mths...
You should try and continue with swimming..I havent been myself for 2 mths due to my mother being ill...
I will start back at the gym next week and start up swimming again...I miss doing all those things..plus I love feeling fit...
Hope this helps
Take care
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Hello to all
I was reading the posts and trying to catch up on what's been happening. Everybody's information is invaluable and this site is just the place to find what we are all experiencing.
In regards to cramps, try tonic water or soda water if your having regular cramps. Whilst my husband was going thru his chemo he was suffering mainly at night with alot of cramps and they suggest for him to take either one of those two drinks to releave the cramping, and it actually work.
Hope this helps.
Miaki
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For me, when my bones or joints act up, sometimes taking a hot shower or soaking in a hot tub can help take some of the pain away. Be careful not to burn yourself. Water temp over 120 is BAD. Turst me, I know!!
:mad
On those cold winter nights, I am in agony with the DDD and DJD, but doing some minor flexes can help lubricate the joints that are aching. Also, notice your sleep patterns. You may be sleeping on a side that is more sensitive with joint pain. Something as simple as turning over can help.
thanks
Dan
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Thanks Maiki and Dan,
It is so nice to communicate with you. I recently read in a newspaper article about how to get some relief from leg cramps at night. It was a column where people write in questions for a doctor and he gives answers. Some one wrote in a folk remedy for cramps and many, many people wrote in that it helps. So, I tried it, and it does help somewhat. It sounds crazy, but here goes.
Put a bar of soap in your bed down by your feet, yes, I said a bar of soap. One night I was having such bad leg cramps that I had to walk around for a long time, and I still couldn't get them to go away. I held the bar of soap right on my legs and the cramps settled down after a while. Now, I always sleep with the soap in my bed. My family laughs at me, and you probably all think I'm a lunatic. But, try it if this is a bad problem for you.
:happyyes Enough craziness for tonight! Jean
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It is not craziness at all. Pakistani women are speciallists in these folk remedies known as "Kitchen Tips!" I heard from one expert on tv that you rub/roll an empty(ofcourse :doh) glass of water on the cramped muscle and I think your soap does the same thing when you put it over the cramped muscle(by the way do you rub it or just hold/hover it over the muscle?).
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Sajid,
Thanks for the support. You are a very compassionate guy. Yesterday, I went to the doctor for the intense pain in my knee. He thought it seemed like an inflamed ligament, but he wasn't sure. I got an x-ray, but won't know the results for awhile. He said I might need an MRI. Then last night the pain spread down my leg to my ankle. Now the whole leg is throbbing with pain and feels like it is burning. I have this periodically, and it takes awhile for it to go away. My other ankle and right hip are burning also. I have read that burning pain can be something to do with nerves. It definitely feels like some kind of inflamation.
All I know is I will have to try to stay off my leg as much as I can. I know I've asked this before, but does anyone else get this burning pain? It has plagued me for years, and no doctor seems to know what it is. This site has been a lifesaver for me as far as support and kind words.
:love Jean
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Hmmm.... Burning pain?
I experience something similar with my heels when I sleep while my Desferal session. It's more like sore skin rather than burning pain, but it really feels as if my heels are on fire and very uncomfortable.
I get this because I lie down straight, facing up and don't change to my side the whole night. So my heels stay in one position too and in the morning I get this burning sensation. Apart from that there's nothing serious.
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Sajid,
I have to move my legs and body all night to keep pain away. If I move, the pain stops for just a short time. So all night I turn over from side to side, rotate my feet, move my hands just a little, etc. It's crazy. I have pillows all around me because it hurts my legs and hips to just lie on my side, I have to have a pilow between my knees and on my sides. Maybe this is fibromyalgia, which I was diagnosed with years ago. I keep thinking it is something to do with thal, but maybe it is just the fibromyalgia.
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.......I sent that by accident before I was finished. I was going to ask if you were feeling better. I hope so. Take care, Jean
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.......I sent that by accident before I was finished. I was going to ask if you were feeling better. I hope so. Take care, Jean
Thanks for your concern. I feel fine. Infact in my other post I said that this week I didn't require transfusion and when the doctor told me that; I felt really grrrr8! :biggrin
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That is great news, Sajid. Now I am thinking that my fibromyalgia is the cause of all this pain I am having. Does anyone out there have Thal and fibromyalgia as I do? Thanks, Jean
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Jean,
Fibromyalgia can cause the symptoms you describe. As with everything else, the thal may create condtions in your body that make the fibromyalgia worse.
I think you may have already seen these sites but for those interested in fibromyalgia there are excellent sites at
http://fmaware.org/fminfo/brochure.htm
The pain of FM is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FM pain has been described as deep muscular aching, throbbing, twitching, stabbing and shooting pain that defines the very existence of the Fibromyalgia patient. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.
Also, a very good overview is at
http://www.mayoclinic.com/health/fibromyalgia/DS00079
It is interesting to note that fibromyalgia and iron overload are often mentioned together. Your fibromyalgia may be realted to the iron levels in your body.
http://members.tripod.com/~hemochromatose/onderwerpen/56.html
How many cases of IBS, CFS, and fibromyalgia are just cases of full blown hemochromatosis just waiting to be diagnosed.?
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Andy,
Thanks for the good sites - good info. I had never heard of the relationship between iron overload and fibromyalgia. I was diagnosed with fibro. in the early 80's. If I haven't had a full-blown fibro flare-up in a long time, then I keep looking at my thalassemia to explain my pains. Now I realize, duh, that I am in a very painful, fibro flare-up (say that 5 times). :rotfl I just have to completely rest until my body settles down a bit. :offtobed
Thanks for helping me sort it all out. Lisa would be so proud of how many people you help. I would still like to know if any other thals have fibromyalgia. Thanks, Jean
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I too had joint pains (left ankle) which started 2 years ago. I initially though it was a sprain but it lasted very long ???.
I consulted a sports doctor and he did a uric acid test for me. It turned out to be gout. He said it was due to the fast breakdown of my red blood cells due to Thalasemia.
This is just my experience.
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Hi guys I'm a severe thal intermedia my post with my case is in theintermedia section , but i suffer tremendoues pain in the hips and shoulders so much so that i take dilaudid as ibuprofin does not work at all so i take about 8 mg of dilaudid every 8-12 hours this helps but is a very powerful narcotic and will soon move to the pathces that have time release , also i do not take l1 or exjade as my condition is recent and ferritin has only been elevated above 300 for about 1 year now at 1300 but dropping ....... please share any other drugs you may use to help with pain with me so far dilaudid is the only thing that helps me !!!!!
Riccardo
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Hi guys I'm a severe thal intermedia my post with my case is in theintermedia section , but i suffer tremendoues pain in the hips and shoulders so much so that i take dilaudid as ibuprofin does not work at all so i take about 8 mg of dilaudid every 8-12 hours this helps but is a very powerful narcotic and will soon move to the pathces that have time release , also i do not take l1 or exjade as my condition is recent and ferritin has only been elevated above 300 for about 1 year now at 1300 but dropping ....... please share any other drugs you may use to help with pain with me so far dilaudid is the only thing that helps me !!!!! nothing on mri cat scan or x rays so we are looking into fibromyalgia which would be an explanation, please leave any coments you can see a full description of my case in thal intermedia secion under my weird thal and horror story!!
Thanks
Riccardo
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... Wow! Now I need to rethink some things. ???
When I was a kid, between ages 7 to around 15, I would randomly get severe leg pains at night. They weren't cramps, they just ACHED and HURT. I used BenGay a lot and that was about the only thing that seemed to help it.
We went to the doctors about it, but no one could figure out why this was happening and no one attributed it or suggested that it had something to do with my thalassemia.
When I became an adult, the leg pains mostly stopped and that was that.
When I was 22, I hurt my lower back from heavy lifting and it took me a while to recover. Ever since, or maybe I'm only just noticing it now, I can't stand to stand or be walking around for over half an hour without sitting down. I'll get lower back aches and my leg joints would just feel... sore.
I'm 25 now and I still have no idea what caused my leg pains or what causes the problem I have now. :dunno
I have, however, heard that people with thalassemia are more prone to skeletal issues. Since joints are part of the skeleton, maybe our joints are also more prone to having issues?
:huh
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There is a difference between join pain and bone pain.
Join pain can have a lot of reasons in thals it's often due to hemochromatosis (to much iron).
When i had high ferritin levels i had join pain in both my knies it desapeared by reaching lower ferritin.
Most people with hereditary hemochromatosis describe this kind of problem and doctors missunderstood it as artritis.
Bone pain has other reasons.
Ineffective extramedullary erytropoiesis is very commun in unwell treated thal major and intermedia. It is a sign of continuous low Hb, the body try to counterbalance the deficience by producing more red cells in other tissues. There could be a lot of consequences due to this, for example neurological complications due to compression of the spinal cord, bone pain or epilepsy. The location and the expansion will determinate the symptomatology. A hypertransfusion regimen usually reduces these masses. It was also observed that Hydroxyurea act by increasing fetal haemoglobin levels in patients with thal intermedia. The most thal intermedia are folic acid deficient, maybe it would be good to take it.
Concerning this issue i found some articles, maybe they can help you.
Issargagrisil S., Piankijagum A., Wasi P. "Spinal cord compression in thalassemia. Report of 12 cases can recommendations for treatment." Archives of internal Medicine 1981; 141:1033-6
OlivieriNF "Reactivation of fetal hemoglobin in patients with beta-thalassemia" Seminars in Hematology 1996 Jan;33(1):24-42
Fucharoen S, et al "Hydroxyurea increases HbF levels and improves the effectivness of erytropoiesis in ß-thalassemia HbE disease
Fucharoen S, et al "Intracranial extramedullary haematopoiesis inducing epilepsy in a patient with ß-thalassemia/hemoglobin E" Archives of internal Medicine 1985; 145:739-42 Blood 1996;87:887-92
Concerning cramps. Thals are magnesium deficient. Since i was a little girl i had every night and sometimes at day cramps in my feet, legs, abdominal muscels, hands...., It desapered when i started to take regular magnesium. Try it you will take a lot of benefit of it.
God bless you
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For me, pain becomes worse right before transfusion time. I'm really happy I found this site now that I am 18 and can help myself rather than depending on others. All the information is wonderful. :biggrin
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HI Ida-Maria and welcome,
The pain before transfusion is usually caused by the excess bone marrow activity brought on by the low Hb level before transfusion. This is why it isn't as bad once you get some blood.
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Hi Guys,
Well as my case is preety rare and my body over the years seemed to mutate to accomodate my week reed blood cells i have had an indium chloride scan done to see where in my bones my marrow is present in light and dark shad of grayin my case every crevase of bonse structure is filled my stucture had no greys but only dark black so all this marrow and of course the body tried to make more and i developed extramedulayry hematopoesis in my brain which needed to b radiated 10 treatments with particle accelerator 300 greys given and the marrow now stopped growing or else it was neurosurgery thank God we avoided this but the pain is always there and very severe i take hydromorphone contin 24 mg every 12 hours and fast acting dilaudid if it get unberable 4 mg that is hoe severe the pain is these opiates used in cancer pastients, the reason aand again this is what my group of doctors says with collegues around the country is that the marrow is trying to expand so much and everywhere itputs pressure on my nerves and triggers the pain!so far we can control it but wwith opiates comes tolerance an then we need to increse the doses but well wait and see!
Any similar cases!
Ric
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It sounds very familiar to me, I have this compliants since childhood, they told my mum that it were growing pains. I believe it is caused by iron-overload, and osteoporosis. I have pain in most of my joints. It also depends what the weather is like, when its humid, misty, cold or raining, I have more pain than when it's sunny and dry.
My joints ache also when I am just transfused.
I use wrist and ankle braces to relieve the pain, the only pain killers I use are paracetamol and diazepam (at night, cause my legs keep moving when I sleep). Other DBA-patients are coping with the same problems, so far as I know. There are not alot of us out there ;) only 1500 around the world.
anae
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Hi, I have beta thal trait. My tail bone was broken when I was at 8-10. I have 3 other sisters and my mom was too busy to take care all of us. Nobody knew that I had betal thal trait until I was 24. So, when my tail bone was broken and hurt, I told my mom. My mom didn't believe me. I waited until I grew up before having my tail bone removed. The bill was payed by my employer. I started to have knee and hip pain 5 years ago after I bought a treadmill and jog everyday. I went to see a doctor who taught me some stretching exercise and the pain was relieved. I have had pain running around my back since 2006. I referred to see a physical therapist. She told me I didn't have any strength on my back. She taught me some yoga postures and told me to practice 2-3 times a day. It helped a lot. I also believe swimming can help too even though I am tired to go to gym. I went to a herbalist recently and got a prescription to help better blood circulation. I found that my joint pain is gone too. If this is the case, the joint pain is somehow related to fast breakdown of RBC?
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I am a 30yo thal major. I am currently being transfused every 2-3 weeks (based on my hgb-i only allow them to let it reach 10). I am allergic to desferal as i have stated in past posts. And currently amnot on any chelator.
I have and have had for several years now "chronic pain" in my knees and ankles. It is mainly a joint pain but at times it also becomes a bone pain also affecting my legs. I describe it as an aching/throbing pain. There hve been many x-rays n mri's n they have diagnosed it as iorn depositsin the joints which are turning into calcifications. If you put your hand on my knee cap and i bend n unbend it you can actually feel a grinding.
Over the years I have been on many diffrent pain medication both narcotic and non narcotic. Actually last year i was put on the phentanyl patch but that proved to be a bad idea it made me very il and i think i actually almost died. I am now takeing 20 mg oxycontin twice daily and 5 mg oxy codone for breakthru pain.
My pain seems to worsen with the weather as if arthritic ie cold n wet weather makes it worse. Activity also seems to aggrvate the pain the more i do the more it hurts. I even have a power chair to assist my mobility. Also my stability isnot that great sometimes my knee or ankle will just give out n next thing i kowi' on the ground!
At times I think to myself i'm only 30 it shouldn't be like this then I try rto remind myself that I've come a long way n for being a thal major i'm doin pretty good. right????
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Have you considered Exjade?
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Hi,
I am really sorry to hear about your problems,wish you best of luck.
ZAINI.
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If you put your hand on my knee cap and i bend n unbend it you can actually feel a grinding.
My pain seems to worsen with the weather as if arthritic ie cold n wet weather makes it worse. Activity also seems to aggrvate the pain the more i do the more it hurts. I even have a power chair to assist my mobility. Also my stability isnot that great sometimes my knee or ankle will just give out n next thing i kowi' on the ground!
I know the feeling! For about 7/8 years( I've just turned 18 :party) I've had problems with my joints, it started off with my knees and ankles, they would just "go" as I was walking etc and I'd land on the floor. I was referred to physio where I was told I had weak muscles and given exercises to strengthen them, it made no difference. I also have throbbing/aching pain in my joints, this started with my knees and spread to my ankles and hips, it's now beginning to affect my shoulders and elbows too. The doctors have sent me for x-rays, bone scans, and many blood tests and they can't find anything out of the ordinary, so I'm continnually on NSAID's (Naproxen at the moment) wihich help to kill the pain a bit.
The doctors think I have alpha thal minor but because of the symptoms I have and the fact that my family is from Greece where beta is more common, they think there's been a mistake somewhere, so I'm not currently on any treatment and my joints just seem to be getting worse.
Not much help I'm afraid, don't know why it happens but you're not alone! :biggrin
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Although it is more prevalent in Greece than alpha thal, beta is not the only thal gene found among Greeks. (I know I had run across this article before).
From http://www3.interscience.wiley.com/cgi-bin/abstract/112699426/ABSTRACT?CRETRY=1&SRETRY=0
Abstract
Using hematological and gene mapping techniques, a cord blood survey was carried out to estimate the frequency of a-thalassemia in the Greek population. Out of 227 newborns studied, 16 (7.05%) were found by gene mapping to be a-thalassemia 2 heterozygotes (a-/aa), and of these only two had increased levels of hemoglobin Bart's in the cord blood (1.2 and 2.0%). Similarly, one heterozygote for the common Mediterranean a-thalassemia 1 haplotype (-/aa) and one for the 20.5-kb deletion type (-a)20.5/aa) were found, showing increased levels of Bart's of 4.8 and 6.6%, respectively. Four (1.76%) heterozygotes for the triple a gene arrangement (/) were found. One individual with a level of Bart's in the cord blood of 8% was found to be a double heterozygote for a-thalassemia 2 and a dysfunctional gene arrangement (-a/-(a)?). These results give an overall incidence for a-thalassemia in the Greek population of 8.4%
This is actually a very substantial number, so it is possible that you are an alpha carrier. Whether or not this is true may be hard to determine. There is a DNA test for alpha trait but it is not widely in use. Alpha thal is actually the most common thal gene in the world, but the difficulty in determining carrier status leaves most carriers undiagnosed.
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Hi Emily,
Regardless of whether or not you are an alpha thal carrier, it would not seem to explain the joint pain, as normally alpha carriers have few if any symptoms. Other possible causes should be investigated. Immune system disorders such as rheumatoid arthritis are possible causes and so is hemochromatosis, a disorder in which the gut absorbs far more iron than needed, resulting in iron overload. One of the symptoms of hemochromatosis is joint pain, caused by iron deposits. Hemochromatosis is also commonly found in people of Mediterranean origin. What Hippievamp describes as grinding in her kneecap is caused by iron deposits. There can also be other causes such as deterioration of knee cartilage, but it may be worth checking. Iron studies would be able to show whether iron is playing any role in your health problems. These are just a couple possibilities.
When the doctor suggested alpha thal minor status, did he say why he believed this? Was it after the results of blood tests?
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Yes, I have definatly been diagnosed with hemochromotosis caused by the blood transfusion. Ever since my extended hospital stay in feb. I have been seeing a liver failure specialist. My liver is fibrosed and starting to sclorose. Also since then I have been seeing a cardiologist they thought I had primary pulmonaryhypertenson but whe they did the cardiac cath they found my levels were ok so i don't have pph but i do have atrial fibrilations (where at times I can feel my heart flutter)
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Very interesting to hear (read) that lots of people are suffering from joint pain.i know this is an old post and I hope everyone that was dealing with pain in 2007 had have relieve from it. I'm a 38 y,female,nearly diagnosed (3 months ago) I'm an alpha thal trait and I have noticed pain on my limbs that pain turned in a major joints pain , but it took virtually all the joints of my body.
As Soon as I was diagnosed as alpha thal trait I related the pain to actually intake of iron what I believe was poisoning me. I stopped the iron and did detoxes , eat a completely raw diet avoiding the foods rich in iron, and took IP 6 for a month and a little bit. I still eating clean foods ,but added a little bit of cooked food and I added the supplements : folic acid 1.6 mg,magnesium 250mg,B-12 60 mcg,C 1.0g,D 400IU,natural E 400IU as d-alpha tocopherol succinate. I have taken this vitamins for at least two months.
I tell you that the pain in the joints turned much more bearable ,around middle of July I no longer felt it ,so I though I was ready to exercise my body so I started to exercise also .After three weeks of running,walking and bicycling I suddenly needed to stop .my knees were so badly swollen ... At first I though I did too much bicycling, however the pain and swelling were so bad that I started to second guess. It took good three weeks to my knees went back to normal. I also noticed some bruising around some areas on my legs ,and as soon my knees started to go back to the normal I noticed that wasn't just on the knees was on all my legs but my knees were the worst areas . Since it happen in July my joint pain is back more evident on my wrists ,ankles,and knees. Today I m feeling my back also. I'm reluctant to take IP6 again once I m not a transfused thal . I have been feeling week again also.today in particular was one of the worst days since my recovery from iron .I had an episode of extreme fatigue and short of breath so I called my doc's office and tomorrow I will have some blood work done and Monday I ll be talking with my PCP again. Wish me luck :biggrin my doc is not an specialist but at least he is trying to understand it and not telling me I'm crazy.
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Just wanted to share my part. Being a minor , i used to have leg pains when i was a kid. Not sure whether it was joint pain or entire bone. If i remember correctly it lasted till I was 18 years. Did regular exercise with outdoor games which involved lot of physical exercise. I used to get exhausted still was happy as I was not getting the pain rather winning trophies. Doctors used to say that the body is growing , hence the pain. Still I do not know why my brothers & sisters did not had the same behavior.
I used to take a tonic (alprovit) to boost up my energy , but today's doctor contradict saying it was just a physiological effect. I am not a heamotologist , so can not say much.
Till age of 30 , i was used to do night shift and also regular exercise. So the pain was not seen. But now being a family man, getting less time for exercise and now I get joint pains . Back Pain is random.
Thanks.
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Check this out
http://informahealthcare.com/doi/abs/10.3109/08880018.2013.771388
I love this article and I think is very important to all of us