Possible consequences of CLL for your body

[Anja-Jantina]

Hi, besides SLL i have a lot of damage to my spine (which of cause causes pain) severe varicose veins (which also causes pain) and coeliac disease.

I am 54 and quite thin.

Can there be a connection between SLL and those other diseases?

[AussieNeil Partner Administrator]

I'm not aware of any connection (not that I'm medically trained). Sadly CLL often just adds to our list of chronic existing conditions...

[Anja-Jantina in reply to AussieNeil]

Now and then i am so tired of having pain in my whole body. I have artritis in my neck, but also enlarged lymfenotes. I do not know how to lay down in bed, pillow or no pillow. My arm hurts me, because there is an enlarged lymfenote in my armpit or it comes out of my neck. My legs hurt me because of very enlarged varicose veins and bad blood flow. Treatment failed because the blood did not flow and the medication did not spread in my veins. I sleep with my legs higher, but still have pain in my legs due to bad blood circulation. I also have neutropenia. Because of that i had many infections. I managed to keep those infections away by taking a lot of supplements. I also managed to stop the lymphocytes from rising. The harmatologist was surprised by this. Also my thyroid gland functions better now, i could stop taking medication for that.

I also have pain in my leg because of hernia and other back damage.

Because of Sll i lost a lot of weight, now the haematologist says i have also coeliakie and i have to stay away of gluten. This also does not help to keep weight.

I try to pick up my job and the normal things, but when i do so, the pain increases. Even buying clothes and trying some clothes on in a fitting room is too much. I start sweating all over.

And before my illness, i did not sweat at all.

All my problems started in the same timeperiod.

I am 54 now, have led a healthy life and am a happy person. I cannot see this as old age problems. I know a lot of people in their seventies who can do everything easily.

I find it difficult that every doctor has its own specialisation. That is also the reason that my SLl was discovered very late, despite i went to see docters for my complaints. The nephrologist said i was fine, the gynaecologist said i was fine and so on. They looked with ultrasound, when they had looked a very little bit to the left or right they would have seen my enlarged lymfe glands. And with that the reason of the discomfort in my belly.

I notice that specialists for cancer are more specialized in medication then in the disease itself.

Sorry for my complaints. Normally i do not. But i just want my life back. In my head i want to do many things, but my body is not capable of doing so.

And i just do not want to have pain all of my life. I want to become healthy again.

By the way - very beautiful bird you have chosen as id. What is the name of it?

[AussieNeil Partner Administrator in reply to Anja-Jantina]

I'm sorry to hear of your health problems. Unfortunately SLL is often discovered in the late stages. I was diagnosed at stage IV and was very ill with infections and fatigue in my first year until I learned to reduce my risk of infections and was then slowly able to rebuild my stamina. I'm still in W&W and my quality of life is significantly better than it was 7 years ago - provided I pace myself. So take heart!

My bird icon is a male Superb Blue (Fairy) Wren. I'm fortunate that can enjoy them in my garden.

Neil

[Anja-Jantina in reply to AussieNeil]

Thank you for your reply, i had pneumonia with high fever, so was offline for a while en then it takes a while to get into the the routine again. The fever was good for my blood counts. But it was frightening also.

[kc1953]

I had severe lower lumbar stenosis and osteoarthritis in both knees and left shoulder, along with hypertension before being diagnosed and treated for cll/sll two years ago at 62. The joys of maturity in age!!

[fapumpkin]

after 9 years of w&w, i stated to get acute back pain/spasm and after struggling for 6 months I had x-rays and MRI scan which showed I had 5 compressed fractured vertebra. This came as a shock as I had not fallen or had any kind of accident, I merely pulled on a handbrake, or on another occasion picked up my cat. Even after being admitted to hospital I acquired 2 more fractured vertebra and within 2 months stated treatment for my CLL. I was tested for vitamin d, and the results showed I was deficient. The following links are about some research into any possible links between CLL and Compression Fractures, Osteoporosis.

bloodjournal.org/content/12...

acponline.org/system/files/...

umm.edu/programs/spine/heal...