Joint Pain in Thalassemia

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


     

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 Although it will have less variety of electrolytes in it than ORS but will do a fine job fighting cramps.

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...

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

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? 

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.

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

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...




 

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...



 

That's a great news!

Wishing you all the happiness and best of health!

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..

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

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

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

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!! 
 
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

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.
        Enough craziness for tonight! Jean