My first official visit here to HW Chronic Fatigue Syndrome

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25341
   Posted 7/28/2013 10:17 AM (GMT -7)   
Hello,
 
I am not new to HW, been here since 2008.  Most of the time in the Prostate Cancer group, and in recent months, the Chronic Pain group.
 
I have been dealing with Chronic Fatigue since year 2000.  It started showing up in my life after undergoing major radiation treatments on some previous cancer bouts.  I had 3 events of an ultra rare cancer, Porocarcinoma.  The last time was the worse, as it was in the lymph nodes of my throat.  They surgically removed  what they could, and then administered 70 gys of radiation the old school way, spread over 35 sessions.  It covered me from below my nose to right about where my nipples are.  I had to wear a special face mask the entire time.
 
I was only 47 at the time, and at first I bounced back fast.  My radiation dr. warned me that it might take a few months to catch up to me.  And boy, did it.  I hit a wall of major fatigue about 3 months post treatments, and it became severe fast.  Enough to have me go into Oncology Rehab for 6 months.  I went 5 days a week, usually at the end of my work day.  The doctor at the time said I would be lucky to get back to 75-80% of my previous energy levels, and he was pretty accurate about that.
 
Now fast forward to 2009.  My original prostate cancer surgery failed within months, the cancer came back, so my last and only curative hope was salvage radiation.  I underwent 72 gys of radiation spread over 39 sessions at the end of 2009.  To make a long story short, it was administered wrong, and it did a lot of serious damage to me, including the loss of my bladder and bladder neck.  It was so bad, I ended up with an Urostomy (stoma).
 
It was from the radiation damage that I developed severe Chronic Pain, due to all the nerve damage from the radiation.
 
But it greatly increased my Chronic Fatigue.  I have been through another 25 months of Oncology Rehab, and my doctors recently had me stop going, because we never made any forward progress, and all it was doing was making the pain issues worse.
 
On a good day, I have about 4 - 6 hours of somewhat useful energy time.  I was never a nap person in the past, but now require a 2-3 hour nap every afternoon.  I rarely feel "rested" even after sleeping, and most nights, I rarely get more than 5 hours of broken sleep, despite being on both Ambien and Tranxene for years for sleep issues.
 
Up to know, all I have known to do was to tough out the fatigue.  Most forms of exercise right now only make matters worse to me, even simple walking due to the Chronic pain issues.
 
What are some other things I could do to help myself with the CF?  I am open to suugestions or ideas.  With me, it's like literally hitting an invisible wall every single day.  Usually by 3 pm at the latest, I will go from feeling ok to being so drained I can barely stand up or open my eyes.  Once I am drained, that's usually it for the day for me.
 
Sorry this went long, but been wanting to come here for many months and introduce myself to your group.  I would have to say, I have gone from 100% energy prior to 2000, down to the 75/80% after the first radiation episode, down to now at the most 20-25% level.  Which makes it very hard for me to do much on a given day, which in turns frustrates me greatly.
 
Any help or suggestions will be greatly appreciate.  Before I forget, I no longer work, have been on full SSD since 2011.
 
David in SC

kayla33
Regular Member


Date Joined Jul 2013
Total Posts : 86
   Posted 7/28/2013 12:36 PM (GMT -7)   
My gosh you have been through it all, and hard!!

My suggestions are not to do with chronic fatigue, but more the cancer and immune side.

I would be researching every possible way to rebuild and strengthen your immune system and liver function. There is a wealth of information all over the web (not from the government or hospital etc websites), about all the things people can do to prevent cancer, to prevent illness, strengthen the immune system, heal their liver, etc.

Many have reversed their cancers. I have no links to provide you right now as I am on my mobile. But there is some absolutely facinating info to be read.

I am a freelance writer, so that is my passion. Since you no longer work, if i were you, i would dedicate my time to researching about reversing immune system damage and cancer damage, and helping out the liver, etc. There's some fascinating bits and pieces you will read.

My advice regarding the fatigue and your post though, is to not over do anything. Let the body do as the body wants. You have been through a lot physically, so there is no point expecting to be bouncing off walls with insane levels of energy. Rest up, and start researching.
/
Newly registered contributer/member, but long time lurker/reader.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25341
   Posted 7/28/2013 7:35 PM (GMT -7)   
thanks for your input. trust me, as a rule, I have to let my body do what my body wants, once I am drained for the day, its like a dead battery that won't recharge.

I have done some writing myself, I have had 3 novels published since year 2000.

On the cancer side, doing as well as expected since cancer is now considered advanced and metastatic.

Trying to learn how to live with the CF, perhaps better than I do now.

david
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3079
   Posted 7/28/2013 8:53 PM (GMT -7)   
Hi David,

What a coincidence that both of us HW chronic pain board veterans came here to the chronic fatigue syndrome board on the same day! You must have read my mind! I won't take over you're thread, and will post my own intro in a few minutes, but I thought I'd just write you a quick reply! :-) I haven't been posting on the CP board lately because my fatigue has just been so bad, I'm really beside myself. I can barely function. Anyways, sorry to hear that you are dealing with this beast, too, but it's kind of nice to see a familiar "face" here! Hopefully the wonderful folks here on the CFS board will be able to help us both!

Skeye

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25341
   Posted 7/28/2013 9:49 PM (GMT -7)   
Wow, skeye, my eyes opened when I saw your name here just now, thought I would come back and check. Glad to see you here, we must have been on the same wave length.

I have heard good things about this forum group too.

With all that is on my plate, with the advanced prostate cancer, all the failed treatments, and operations, the chronic fatigue part I have mostly kept on the back burner and to myself. I have mostly toughed it out over the years. But as I continue in my downward spiral, the CF part can sometimes be as much a QOL issue as the CP part. And I do believe that one problems makes the other problem worse, kind of an endless  and vicious circle.

Will read your post here. Looking forward to both of us getting some extra help.

david

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/28/2013 10:43 PM (GMT -7)   
David, welcome to the forum, you have travelled a hard road & I hope you find some relief from it soon. I know all of the treatments you have had take a toll on your body so having chronic fatigue certainly is understandable. I am sorry you were told that you will not feel up to your old self again. I was told that & it took awhile before I understood what my Rhuemy meant. It must have been a blow, one of the things you will do is mourn your old self, the self you were hoping to get back to. It is not a fun journey but all who have chronic illnesses have to do this. You probably have done some already with the length of your illness.

I am not sure if you have CFS or if you are chronically fatigued. Either way I can tell you some of the things I do & they may help you. Supplements I take are CoQ10 & Magnesium Malate, both for energy. They, also, help with memory & congitive problems. I know it is not recommended but I drink lots of caffeine, it helps me to stay awake & have some kind of day. Without it I am dragging so that is one you have to think about. I was very sick for a while & my daughter suggested protein so I decided to see if it would help, it did so I think my diet was off due to being so tired I didn't eat. Adding the protein shakes gives me a boost each day & I feel a lot more energetic. Another things is pacing myself in everything I do, deciding what to use my energy on is a something I do all of the time. It has become second nature to me now & I always find myself gauging where I am at on energy & what I have to do.

It sounds like you need to talk with your physician about your sleep, what you are taking doesn't seem to be working. You need to be able to sleep to have any kind of energy. Not getting enough sleep will leave you lethargic, fatigued & foggy brained. I take Tizanidine & Trazadone to sleep & it has helped me for several years. Each person is different as to what will work for them so it is trial & error.

I wish I could help you more but maybe this is a place for you to start. The things I take are for CFS and are geared towards that but you may find some benefit from it. Take care of yourself & it is nice to meet you. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25341
   Posted 8/4/2013 7:56 AM (GMT -7)   
jewel,

I can only say, 3 doctors have officially dx. it as CFS, and part of my medical claims when I was approved for SSD included these dx's of CFS. I do not know much about the details or particulars of CFS specifically as a malady.

But I certainly know how I have felt since year 2000, when the first radiation bout triggered it. It got severely worse after the blotched and greatly damaging second radiation bout in 2009.

Commenting on some of your comments (which I appreciate greatly):

Caffeine - by choice, I have been caffeine free since around 1991. Only caffeine I get, is what is naturally in chocolate.

Diet - been having appetite loss issues the past year or so, on a normal day, I eat one real meal, and even then relutctently. It's rare that I ever feel hungry-hungry. Some days, if I am doing any consulting work, I eat lunch, and then dinner later, but always a light lunch. While when I do eat, we try to eat fairly healthy and balanced dinners, seems like the only things my body craves is protein and/or sugar. I admit, then I have been a lifetime sugar junkie (but have never had any blood sugar issues)

Exercise - was in Physical Therapy as part of an Oncology Rehab program for 25 months. Recently dropped out at the advise of my Oncologist, because we were never making any forward progress, and with my Chronic Pain issues, it made things worse.

Personally, I see a vicious circle at play. The fatigue makes the pain worse, and the pain makes the fatigue worse, its like a no-win situation most days.

Sleep - has been a life time issue, and runs in my family. So my oncologist does work closely with me as he has said, my lack of quality and quantity of sleep is making all my issues worse. You name it, I have tried it, including going to Sleep Disorder Centers. The combination of Ambien/Tranxene has still been the best mix for me over the years, but hardly perfect.

Thanks for taking the time to reply. I will be checking back here on a regular basis.

Hope you are doing well, well as can be expected with CFS. 7 grandchildren? Wow, that sounds tiring in itself, lol. We only have 2 and that looks like all there will be from our 3 children.

david
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

Deniclair
New Member


Date Joined Aug 2013
Total Posts : 7
   Posted 8/10/2013 5:31 PM (GMT -7)   
Hi David and Jewell,
I am an occupational therapy asst. that has been struggling with CFS since 1999.

Jewel, I really appreciate you comments about letting go of the dream of getting back to my "normal". Went Gluten free almost a year ago, and my symptoms went mostly away. I thought I was on the home stretch of getting totally well, changed jobs and started walking up and down stairs a lot to " get healthy". Last week experienced the worst onset of symptoms since the beginning. Couldn't hardly function. Everything in a huge fog. So discouraged, back to below square one. Getting a little better today.

Have to learn to accept each day as it comes, and realize that I am who I am, and enjoy life within my limits.
Good to see another Denise, I'm a mother of two and a Grandma of 6 who loves to play with them, was sad that they couldn't come play this weekend.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/12/2013 9:46 PM (GMT -7)   
Denise, I posted on your other link but wanted to comment here too. Welcome to the forum, it is nice to meet you. This forum can be slow at times, I know for me it depends on how I feel as to whether I post or not.

So, do you think you are also gluten intolerant? My granddaughter, Emily, is allergic to wheat & she feel terrible when she eats it. I know it can make her really tired, lethargic & sick to her stomach. When I was first dx.d, I found out I was allergic to soy & felt so much better when I went off of it. Unfortunately it didn't make me feel totally better but staying off of it for several years, I can now eat it again. I went gluten free for awhile but saw no difference so I eat it now.

I do think it is very important to mourn our old lives because you really can't move on in your new life without it. I think people just stay stuck trying to find a way out of the illness, always believing there is a cure or a fix that will help them. I did that for quite awhile & kept finding myself in the same spot each time. I have found I am healthier because of all I do & the suppliments I take but still ill. I am also, in a better frame of mind. I use to worry that coming to terms with the illness was giving up but I see that isn't the case, I am just more at peace.

I am happy you found us & hope you keep posting & letting us know how you are. Many hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/12/2013 9:59 PM (GMT -7)   
David, I wanted to check in & see how you are doing. I think about you alot & hoping you are doing well. I wish I could have helped you more with your CFS but it sounds like you have tried all of my tricks, lol. Really there isn't much to be done about it, just keep on keeping on. You have a good attitude & that is what it takes to live your life dispite illness & I know you know this better then me. I hope you will stop in & let us know how you are doing. Many gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 8/18/2013 8:23 PM (GMT -7)   
I am envious of all of you good friends to share your lives with. Just this moment I asked my husband if he would just read a bit on here. His answer was"why do you keep on reading that s47t. You all feed on each other". I am working hard right this moment trying to breathe and follow all rules to keep from haveing a Panic Attic. I need someone to chat with for real.. I am an old lady and I get nooooooo respect at all. I have had it up to my eyeballs. I cant take anything anymore. the pain, my mind, my memory, my arthritis, my fibro, my CFS, my depression, I just dont know how I will get thru another day..thanks for reading.....love to anyone there....Cathy
I am 62 years old. I was diagnosed with clinical depression 30 yrs. ago. Followed by: Fibromyalgia, spinal stenosis, arthritis, Neuropathy in both feet and lower legs for 8 years. Recently have neuropathy like burning in both hands and arms, possibly from damage to my neck.. I was diagnosed with diabetes about 4 months ago so my neuropathy is still diagnosed as idiopathic. Fibro and CFS.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/18/2013 11:34 PM (GMT -7)   
Cathy, I am sorry for what you are going through, it is hard to live with chronic illness. It is hard to deal with others who do not understand what we are going through & all we want them to do is "get" it. My late husband didn't get it but he tried to be understanding & that is all we can ask of anyone. I think he felt he couldn't fix it so couldn't deal with it. Your husband may be the same, probably is, as most men want to fix things, it is how they are wired. It is not that he doesn't care just can't help you & that is how they show love.

I will be 62 in November & still see myself as young but experienced, lol. I know how you are feeling though as I go through it often with my depression. I have had to deal with depression for most of my life. Counselling helped me greatly, have you thought about seeing someone? You are going through a mourning process & it sounds like you are stuck. It is hard enough to have chronic pain & illnesses but to be depressed too is over the top. Start by getting yourself an appointment. Before you do anything go to the depression forum here on HW. It is a very active forum & they can help you so much. I go there often to just read & keep myself grounded by the advice people get. You are very welcome to keep coming back here to vent anytime you want, CFS is hard to take & as the days in bed drag on my depression deepens, it is a vicious cycle. I live for the good days, I do have good days & I count my blessings daily. My children & grandchildren are so special to me & my faith keeps me going when everything else goes by the wayside.

Take care of you, take it one day at a time, come here often to vent & try to take a deep breath & relax. Many soft & gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 8/24/2013 2:11 PM (GMT -7)   
Purgatory, have you ever tried a Hypnotherapist for your sleep issues? I too have had sleep problems most of my life and the holes in my brain don't like pills, but after only 1 session with this woman(which was all I could afford) I started sleeping through the night, with no drugs, no racing thoughts, it was Amazing!. She also gave a CD of her repeating what she's said in the office and I literally wore that CD out! It lasted for a Year and its still Nowhere Near as bad as it was, of course I am a Whole lot sicker than I was 3-4yrs ago, but as soon as my daughter's wedding gets finished in Nov., I am gonna start saving and looking(I recently moved from Phx to Spokane) cause there is Nothing like a good nights sleep!
Craniotomy/Meningioma 12/02,Bi-P. 04,SMI 06, Glu./Wh./La. Int.,IBS 06, Mig. w/ps.-seiz. 07,Dev.Sep.Sur. 9/07, 2nd Men./Tu. Gam. Kn. Rad.12/08, Rad. Hyst. 09/09, w/Meno, Fibro. 09, Disab. 09, EBV/CFS? 11, Vom., D + C w/Vertigo 12, C-diff, spas. col., Chr. Fat. Mod. 13, Lots of Meds they ch. often + herbal meds + alternative when I can afford it.
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