Hi there,
Does anyone out there have b. cancer and ME/CFS?
I’d really like to hear from anyone!!
L x
Hi Flaxhigh
One of the moderators on the other site (sorry I am not allowed to post the link) suffers from CFS. She doesn’t use BCC very often so I will email her and ask her to come here and “talk” to you.
Best wishes
RMW
I have emailed her now, hope you don’t have to wait too long for her to contact you.
Best wishes
RMW
Hi flaxhigh
I never recovered from chemo and rads. They kept saying I would, but I didn’t. A lot of the symptoms I have are similar to those I had on chemo but they are also classic CFS/ME symtpons too. Eventually I was diagnosed with CFS - at least 5 different doctors told me I had it !! Later I had some tests and they showed Mitochondrial damage and seriously compromised energy factors. The chemistry is too tough to explain here, but there’s a particular protein which is way below normal test values etc. etc. The doctors all say it was due to chemo. I have other symptoms of chemo damage as well - saliva glands packed up (dentist describes them as fried by chemo!) - and looking likely my bladder has been fried too.
It is very hard to cope. I do it by being very strict about planning activity down to the last cup of coffee. It took a while to accept I was stuck with it, at least, so far it shows signs of getting worse not better. It feels like having BC is still very active for me as I have never been able to restart anything much of what life was like before BC. I take one day at a time.
Anyway, that’s me.
If there are things you’d like to know - I’ve done a lot of research and developed a lot of ways of making life better - coping skills ! - can you let RMW know as I don’t log on here very often and may not see a reply for a while.
Hi Flaxhigh
Just read your post. I was diagnosed by a neurologist and also an immunologist, with severe Fibromyalgia Syndrome in Dec. 2006. In April 2006 I was dx with Hypothyroidism. My breast cancer dx and mastectomy were in July 2005. Subsequently I have also been dx with CFS - . although the Fibromyalgia causes me the more functional problems and severe pain ( have been treated by wonderful Pain Management Clinic since Jan.2007 ) The sheer daily effort of dealing with these conditions as well as BC can only be understood by a fellow sufferer, so I truly empathise with you as I am dealing with it too every day.
I so agree with pamelap, as I too have never had the chance to ‘pick up life again and run with it’ following bc treatment as everything went from bad to worse physically .It’s taking me a long time to accept the chronicity of it all and I guess that’s why I haven’t quite come to terms with pacing etc. although I now realise that it is key to coping with each day.
Do let me know how things are going - thought I was the only one dealing with this as well as bc- sorry you are too!
Love Seren xx
Hi Ladies
I was diagnosed with fibromyalgia about 6 months before I was diagnosed with BC.
As my tumor was nearly 4 cm it has made me wonder if the BC was there first and then that had contributed to it.
My symptoms all seemed to roll into one this year as with the chemo making me feel knocked for 6, it was hard to tell
what was causing what!!!
Take care
Angie
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Hi…yes I have had ME/CFS since 1993 and in Oct 07 I was diagnosed with a DCIS it was removed and now I will be having radiotherapy from the 15th Jan for 3 weeks. I too am concerned about the effect on my ME which has been fairly manageable for some time…more fatigue is not something I look forward to!..I wish you well and I will wait and see…
Luv Thialoz