Sikcell: People living with Sickle Cell

We still Hope

AVN, SCD, RA

I have Avascular Necrosis of both Hips and Rheumatiod Arthiritis in my right elbow (I'm right handed so this effects me a great deal) and left knee and Sickle Cell SS. I have been to many doctors and specialist. I have had two surgeries in three months and I might need another one. I'm also on a butt load of medications. I do what I can to keep going but the pain NEVER goes away. Constant back and hip pain all the time. Did I forget to mention that in February I lost feeling in my lower face from a really bad crisis and it still has not returned. Has any one ever lost feeling in their face do to crisis? Days are getting harder and my body is getting use to my pain medication. The sad part is I'm on Hydromorphone (Dilaudid) 4mg tablets thats alot and I still can't shake the pain. Worst of all my migrains are back. Any suggestions or can anyone relate to this. How do you coupe with so much and still try to hold a normal life with work, school, family and friends.

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Comment by Austyn Hart-Tinsley on January 20, 2012 at 12:06pm: I want to thank everyone for your information it is hard to keep a normal life style when your only 24 and can’t do much. The cold effects me very bad so I have to stay inside most of the time I can’t even spend much time at my boy friend’s house because it’s an old Victorian house and drafts are bad I have to wear many layer and even use blankets it make him feel bad because he think his house keeps me sick. The only form of exercise I get is walking when it’s not too cold out I try and walk a mile every other day. I do go to PT for my AVN and I use cycles and warm water swimming which helps a lot I want to get a gym membership that has some of those things. I feel that the warm water swimming really release some tension and pain as well as helps the joints. I would love some suggestion of anything else anyone has. Stress is a HUGE part of me getting sick and since I’m an Aries I stress hard. Anyone have any suggestions that help them get rid of stress that’s where I get bad migraines from?

Comment by dawn denise on January 16, 2012 at 12:46pm: hi kiara, i am inspired - a dancer and a kickboxer? with sickle cell disease? i used to be very active with sports and swimming and even running but as i have gotten older (i am now 41) i have really had to slow down. i no longer allow myself to get wet outside - i was caught in a rainstorm once and had pain very soon after getting drenched. i no longer run or exercise intensely but i do go to the gym and walk on the treadmill sometimes and try to stay active because i find that it helps with my energy level. if it is cold and i don't wear a scarf then i get pain in my clavicles:( life feels like it is getting smaller but don't get me wrong i am so glad to still be here and to be the mother of 3 healthy children and to have a job and to be able to feel the sunshine on my skin and to know that GOD loves me and sees my pain. i think that i am developing AVN in my hips too as one of them has had pain for the last several years but it hasn't yet interfered with life much.

i hope that you are in a good hospital and are getting good care. this too shall pass. thinking of you and saying a prayer for you right now!

Comment by Kiara Owens on January 16, 2012 at 8:00am: Hey There,

Im currently hospitalized. I was admitted on Jan 10th, 2012. I also have AVN but of both hips. I'm a dancer as well as a kickboxer but day by day things do get worse. I did lose feeling in my face on Jan 8th-9th. It comes from being in so much physical pain that neurologically your brain numbs your body. I hope you get better!

-Kiara

Comment by dawn denise on January 14, 2012 at 2:34pm: have you tried hydroxyurea? for many people it decrease the intensity and frequency of the pain. i hope that you have a good support network. on the having a normal life part...i think we just have to accept that our normal is different from most people's normal. the bad thing about pain is that you suffer alone and no one else quite understands and, i do believe, that many close friends and family members often don't believe us.

i hope you feel better soon.

Comment by Fahid Rabiu on December 21, 2011 at 11:15am: Hi, about 4 years back I experienced lots of pain in my hips and back due to an infection, I had 2 surgeries in 2 weeks, a core decompression and hip replacement and had to take a lot of pain killers each time my body gets used to a medication, the dosage is usually increased or the medicine is changed. Its hard coping with everything, but at the time I had this, I was just entering university. About couping, u hav to try, leave what you cant handle. I skipped lectures when the pain was much and had a few friends who helped me. Just be hopeful all the time. I believe we will all pull through our difficulties.