So incredibly frustrated

Brain and nerves
1

Hi and thank you for taking the time to read my post.

I was diagnosed with Non-Hodgkins Lymphoma in 2012. There were many times during my chemotherapy that I ended up in the hospital due to fever mixed with very low white cells.

After chemo and radiation, I didn't recover the way other patients did. For a long time I thought that it was just a matter of being patient..but it kept getting worse.

Sparing you all the boring details I will just say that I went from walking before radiation to being in a wheelchair to now being mostly bed bound.

The pain started to hit me after the horrible fatigue. I couldn't tolerate a blood pressure cuff touching me. Due to pain alone, I was admitted several times.

My oncologist was the one to finally tell me that I had chronic fatigue. Finally! A doctor to help me..then she moved to Alaska. Sighs

So here i am once again trying to find a doctor to help me. Missouri doesn't seem to have any neurologists that work with CFS.

I can't put into words the impact that this has had on my family. Prior to the cancer, I was an active young Mom of 2. Now years later I am in bed.

Not the place I want to be. I've missed out on so much.

My symptoms are fatigue like I have never felt before. This fatigue cannot be cured with sleep. No matter what i am tired. Too tired to live I just get by.

Back to symptoms: pain all over my body, pain with the slightest touch to my skin, sudden shooting pain anywhere on the body, dizziness, inability to tolerate exercise, cannot walk far, weakness of all muscles, vision that goes blurry and is unable to be fixed with glasses, it's, my right leg has issues with poor muscle tone, air hunger, at times I feel as if I am coming up cdim the bottom of a pool and I am running out of air. It's as if n't my body is forgetting to breathe. These are the main symptoms.

Does this sound like Cfs? I just want my life back. My mris are normal and my patience is thin.

Is there a list of Dr.s that are treating this that i have not seen?

Help

Signed

Rip van Lorree

2

Hi Loree, yes it sure does ,not so sure about the body pain though,some seem to have it but i didnt ,but had bad fibro ,since i have beat that tho ,, im in year 4 and went from bedbound for 2 yrs ,to light chores and shopping ,,its all about ""pacing"" but yet at times ""determination"",,its tricky and will try your patience, Spirituality has been my saving grace and I believe i will fully recover! You sound like a strong person deep inside , it takes time but You will get there with dilengence and love for Sure! <3 Guava,,rest is important as well as building up resilence again!

3

Lorree--I'm so sorry you're having to deal with all this. Here's a good link to ME/CFS specialists throughout the U.S.  http://www.cfstreatmentguide.com/doctors-and-clinics.html

4

Hi Lorree,

I met someone else on here who had cfs/me after cancer/chemo and there is a condition that i can't remember the name of that has these symptoms . Not a good day for me today but When i find the thread-it was about 2 years ago-I'll let you know.

Beverley

5

Found it! it's called chronic systemic syndrome and mimics lupus/fibromyalgia. It's a reaction to chemotherapy and has treatments it seems for symptoms. The person i was talking to had medication for serotonin levels and was going to see gp about other meds.

Hope that helps

No energy for more now

Beverley