Discussion Forums > Thalassemia Major

Help! My sister is in Pain

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§ãJ¡Ð ساجد:
Calm down Kimi,

She said that she doesn't mean it in a rude way. What I think is that she meant that there are some medicine that have the reputation of being addicted by like some pain killers and asthma medicine. I myself have an observation about it. My nephew and I am asthmatic; I however have learned to control my condition just by will power and have not taken any medicine for more than about a year while my nephew (who is just a kid) keeps taking his medicine all the time.

I'm not saying to stop taking medicine at all; but you can prevent excessive medication if it can be cured without using them in some cases.

Angel123:
Kimi,
The most important part of a problem is identifying what the problem is. I also have a friend who started off taking prescription tablets for pain when she had surgery and had a real hard time getting off it simply because she never wanted to admit that she has a problem.

please dont react to the statemnet Polly made, the first thing is being honest and understanding what the problems are. Thalassaemia does not actually cause pain, most of the condition is silent apart from the endless pokes and sticks the patients endure. Iron although it can kill you, creeps up on you and the patient is not really aware of it until they get their ferritin and biopsy results. Of course there are twinges with the bone but for most its just living with the condition.

From what I have seen and read, it is very difficult for the patients to live with this condition but you know what, your sister has to actually admit that she has a problem before she can actually get help. i also think that its is great that you and your family members are fully supporting her but you too also have to recognise what the real problem is and get help for that.

Please dont think that I am just being harsh, but I dont think that anyone who is addicted to any substance be it prescription or otherwise actually voluntarily go that route- its always to combat a present problem that stretches into even bigger ones.

You sister is lucky to have you by her side but you have to take steps to either get rid of the painkillers or find the root cause of the pain.

I hope that you find your solution, maybe you can put it in prayer as well.
Sammy

Andy Battaglia:
 :referee  Please do not characterize patients as addicts. The word has such a negative connotation and conjures up such stereotypical images. Both thalassemia and sickle cell anemia have long histories of being seen as a stigma, and patients and carriers have had to hide their status to avoid being ostracized by their communities. Adding to this stigma by labeling one an addict for doing no more than using the medication that the patient has been instructed to take as treatment, gives a completely wrong connotation to why the patient is using the medicine and only adds to the stigmatization of the patient. Unfortunately, this stigmatization goes beyond the community and reaches right into the medical community, often adversely affecting the treatment of the patients. Kimi has already established that these drugs have been pushed on her sister by the doctors, as treatment for her pain. As difficult as it may be to accept, this is actually a common treatment for sickling crises. Not only are the painkillers prescribed during a crisis but they are often pushed on patients even when they are not experiencing pain, because the pain may come back. If you care to read through this study at http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=28137  you will get a much better understanding of how this happens.


--- Quote ---The relation between patients with sickle cell disease and hospital services is one of several major non-clinical dimensions shaping experiences of pain management and behaviour for seeking health care. Experiences of hospital care show a range of interrelated themes, which are common to most participants across variables of sex, ethnicity, and hospital attended: mistrust of patients with sickle cell disease; stigmatisation; excessive control (including both over- and undertreatment of pain)and neglect.
--- End quote ---

Sickle cell beta thalassemia can range in severity from mild to severe, with symptoms identical to sickle cell disease. 44 of the 57 patients in this study were HbS beta thals. When you read through the patient quotes, you quickly see a pattern of over treatment with painkillers and I get the impression this is done partly because it is easy and the patients can be basically be brushed off by loading them with painkillers. Addict implies some degree of responsibility of the patient in their dependency on painkillers but it is actually a combination of the need to treat the pain of sickling crises and the over medication by so many caregivers. There are quotes here from patients who were told to take tablets without even being told what they were taking. And truthfully, how many patients in any hospital will say no when told to take a pill? Patients are at the mercy of caregivers when hospitalized, which is common for these crises. Because of the very real pain involved in this condition it isn't so easy to take a patient off of painkillers, especially when they have been the long term treatment for the condition. Admitting one has a problem with drugs won't do much for one who is being regularly treated with these drugs for sickle cell thal. It is obvious that this condition is not being treated as best as it could be by many hospitals but is that the fault of the patients and should the patients be labeled as a result? Perhaps it would be better to label these caregivers as drug pushers. I would not agree that patients should be given painkillers until all other treatments such as blood exchange have been utilized, but even then, painkillers will often be necessary.

I would also like to mention that the side effects of thalassemia can and do cause excruciating pain for many patients. The founder of this group was one of them. Lisa suffered from osteoporosis that slowly made her bones crumble. The pain she was in during the last year of her life was immense and her bones got so bad that they broke just by being moved in bed. Her doctor also broke three ribs just by examining her chest. Lisa was in unbelievable pain and to watch her was one of the hardest things I have done in my life. When she came to visit me I would walk with her to her car when she left with my arm around her to help support her because her legs were so weak. She told me many times that she felt like an old woman. Lisa was on very heavy pain medication regularly and in the hospital they gave her everything they could and the pain was still unbearable. I would hate to think how bad it would've been without the painkillers. She was on them for a long time. Did that make her an addict? Absolutely not.

Kimi's sister has a painful chronic condition that is routinely treated with painkillers. This is a far more complex issue than some addict who needs to kick a drug habit. In my opinion, the only thing that will reduce her dependence is better treatment for her when she has a crisis. Her treatment has not been the comprehensive care she was getting with Dr De Castro and most likely nothing is going to change for her unless she can get back into that quality of a treatment program.

In the meantime, please try to refrain from adding to the stigma that so many patients already have to endure. And if you need a better understanding of the constant stigma many thals still live with, talk to the Maldivian boys or an Indian woman. Ask them how many parents would let their child marry one of them. And this takes place throughout the world. One mission of our group is to educate people so that stigma will be lifted. I hope within our group we can have more understanding and sensitivity.

Sajid, willpower will not open the airways in your lungs during an asthma attack. It is possible to reduce the panic which can worsen an attack by relaxing and calming oneself but asthma is a physical condition that can kill and one should be aware of the possible outcome of severe attacks. I learned yoga deep breathing techniques many years ago and while this can help relax me, no matter how deeply I breathe it does not affect the inability of my lungs to inhale and exhale. The drug, albuterol does. Even though I seldom have an attack, I carry my inhaler everywhere I go because if I do have an attack, and they can come with no warning, albuterol will keep me out of danger. My son almost died from asthma when he was three. His carbon dioxide level was triple normal, over 50, and if not for prednisone, he would not be alive today. Saying you can overcome asthma with willpower is no different than saying you can overcome thal with willpower. They can both kill, but they can also be treated. The danger of an asthma attack should never be underestimated.

Danielle:
I absolutely agree with everything you said, Andy.

A large number of Thals, including myself, experience severe bone pain, that can be relentless at times. Many of us have a tolerance for medications, and therefore may need stronger meds or higher doses.  When we have pain, most of the time a "Tylenol" or "Advil" won't cut it.

I cannot tell you how many times I have been called an addict by a doctor or nurse in the hospital, because I needed very strong doses of intravenous pain medication after one of my many surgeries, instead of the small dose pills they normally give out.  It's not because I'm a drug addict and wanted the pain medication, it's because I needed it to be free of pain.

I've also been admitted into the hospital several times for microfractures in my back due to osteoporosis, and the three herniated disks that I have in my neck that pinch on nerves, and all those times I needed very high doses of intravenous Morphine, Dilauded, or Fentanyl to try and keep me comfortable.  Even then, with that kind of medication, I was still in severe pain.  However, I was continuously told that I "may have a drug problem."   :rolleyes

When I went to nursing school, we were taught that "the patient's pain is what they say it is and not what you think it is."  We were taught to medicate them without judgment, and give them the benefit of the doubt.  We cannot tell someone what kind of pain they are experiencing.  That's completely absurd.  I hope that schools are educating these doctors and nurses better these days, because pain management has become a huge thing.  These old school medical professionals need to be re-educated, or keep up with their CEU's (Continuing Education Units) on pain management, especially with disorders like Sickle Cell and Thalassemia.  I truly believe that education is the key to ultimately silencing this stigma.

I'll never forget the one doctor that actually believed me when I was crying in pain with my back.  I was on the highest dose of intravenous Morphine a person could have without killing them, and I was looking this doctor straight in the eye, telling him how much pain I was in.  He looked at me and said, "I believe you.  You definitely have an unbelievable tolerance ... because no human being would still be alert and oriented with the amount of medication that you have in your body right now."

§ãJ¡Ð ساجد:
Yes, Andy you are right.

Even I do carry my Inhaler with me all the time because you never know when it will be too much to tolerate the attack. I was just worried about my nephew that he takes it way too much. He even needs it when laughing watching cartoons :biggrin We never prevent him to take the inhaler. I just thought as a person grows, he/she will grow out the need of the medicine. It's not an addiction; just maybe the body can overcome if you want. I guess this is not always the case. :dunno

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