Joint Pain in Thalassemia

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 ) 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?).

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.
                                                    Jean

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.

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.
 

.......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

.......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!

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

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.?

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).      I just have to completely rest until my body settles down a bit.   
     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

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. 

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

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

... 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.   

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?

 

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
     

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.