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memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 5/16/2013 2:12 AM (GMT -7)   
I just wanted to introduce myself.  I am a 72 year old grandma and greatgrandma who has had CFS and FM for the last 35 years.  I have several other health issues as well and would like to contribute to this board.  I can use all the help I can get, also, just to make it through every day.
 
Glad to have found this forum...     Memaw12

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/16/2013 8:19 PM (GMT -7)   
I'm wondering if I've got CFS. I get so weak and fatigued quickly.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 5/17/2013 12:13 AM (GMT -7)   
Blueyes868,     It sounds like you've been through the wringer with the colonoscopy.  I hope the diarrhea stops soon.  It can make you so miserable.  Are you taking anything for it?  Do you have CFS?

Post Edited (memaw12) : 5/17/2013 1:20:26 AM (GMT-6)


memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 5/17/2013 12:19 AM (GMT -7)   
Joy,   I don't know if your name is Joy or if you are just joyful!  Either way, nice to meet you.  If you want to read a lot about CFS/ME, do a search for Canadian Criteria for ME/CFS.  It tells you more than the other ones.  You can check out all your symptoms.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 5/17/2013 8:31 PM (GMT -7)   
memaw12, it is so nice to meet you & welcome to the forum. We can use your support. I am 61 & I have had CFS & FM for about 8 years & just seem to be getting worse from the CFS. I am going through a major flare & haven't been out of bed or off the couch in weeks. I will be happy when this thing is through. I am also dealing with vertigo for the last week & am so dizzy it will make me sick to my stomach. Haven't had to deal with this at such a level since I was first dx'd. How are you dealing with the CFS? How well do you sleep? I have to use meds to sleep & then I sleep for about 10-14 hours per night. I have read that a small portion of people with CFS have this sleeping pattern. It is no fun & I am always curious what others are doing for their sleep.

Joy, Welcome to the CFS forum. Finding out if you have CFS is the same as for FM, it is a diagnosis of elimination. Talk to your Dr or Rhuemy about it if you are concern that you have this. Definitely do the reading that memaw talked about & learn about this illness. My daughter has Lupus & I know she gets very fatigued with it but that isn't saying you don't have CFS, if you are more fatigued then you have been before then it is something to check out. I hope you don't have it with all you have on your plate but statistics do say that 60% of people with FM have CFS, where as 30% of people with CFS have FM.

Take care & many gentle hugs to you both, 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

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 5/18/2013 12:59 AM (GMT -7)   
Denise,  Thank you for the nice welcome.  It's very hard living with CFS and FM as well as our other illnesses but it does make it a little more tolerable when we have others to share it with.  I have 4 grown children and 14 grandchildren, and 5 greatgrandchildren.
 
I've had these conditions since before most of them were born. When I got sick in 1978 I only had one grandchild on the way. One of the hardest things to deal with has been not being able to be an active part of my family's lives.  I am homebound and rarely feel up to seeing anyone.
 
I have major sleep issues.  I sleep days instead of nights and usually sleep about 10 hours.  I have pretty good results taking small amounts of antihistimines for sleep and allergies.  I am very sensitive to meds.
 
It's so nice to meet you and I look forward to sharing our stories.  

Post Edited (memaw12) : 5/18/2013 2:04:35 AM (GMT-6)


ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 5/18/2013 5:47 PM (GMT -7)   
memaw12, your right it does make it more tolerable to have others who understand, those who are going through the same things. It makes me realize how real this is & it is not all in my head.

I have 4 grown children & 7 grandchildren. I feel really sad that I can't do all of the things I would have liked to do. The nice thing is I have one of my daughters & her two children living with me so I can be a part of their lives. I wish I could spend as much time or energy on my other grandchildren but they all live far away from me.

Like you, I am pretty much homebound & make it out very seldom. I do enjoy when I get out & can even go out a few days in a row but that is if I am not flaring. I have been housebound for the last month I think & tomorrow I am going to go out for awhile. I hope I can make it. I have been feeling a little better for the last couple of days, but as you well know, tomorrow can bring anything from feeling good to down in bed sleeping.

I usually go to sleep between 3:00 & 4:00A.M. then I sleep until 3:00 or 4:00 on the afternoon. My days are really different & I am always trying to switch my sleeping around but this seems to be where my body likes it best. I will continue to try to change it, lol, I like a good fight I guess. I know it takes a lot of commitment but when I am sleeping trying to get myself up is soooo hard.

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

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 5/18/2013 6:31 PM (GMT -7)   
Denise, Your sleeping pattern is a pretty good one compared to mine. You do get part of the day to be up and functioning.

I used to be able to go out once in awhile to the mall or to Home Depot or a restaurant but can't do that any more. I have to use a wheelchair now and have a lot of trouble walking and keeping my balance. I also have pelvic prolapse and a lot of discomfort when on my feet.

It's nice that you have grandchildren around. I know they are a blessing to you.

Maybe one day they'll find a cure for us! Hugs to you, memaw12
Chronic Fatigue Syndrome, Fibromyalgia, OA, Hypothyroidism, Diabetes Type 2, IBS, Neuropathy, Ocular Migraines.

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 5/18/2013 8:18 PM (GMT -7)   
n
Chronic Fatigue Syndrome, Fibromyalgia, OA, Hypothyroidism, Diabetes Type 2, IBS, Neuropathy, Ocular Migraines.

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 5/18/2013 9:16 PM (GMT -7)   
Hi memaw12 and welcome to our forum. You will find a lot of people with multiple issues, including me, and a lot of support here. My kids are only 22 and almost 18(3 weeks) and no grandchildren which I'm grateful because my daughter is married to a military man, he's a great guy, but they could be anywhere at any time and so would my grandchildren. I also haven't gotten over the empty nest yet although as I am leaving where we live now and my son is staying I won't have much of a choice. I am going to live with my mother and my grandmother because I can't live alone. So not ok with that either yet, I'm only 44. Enough about me, I look forward to learning from me as you 30 more years experience with this illness than I do. Again Welcome. Angie
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.

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 5/18/2013 10:11 PM (GMT -7)   
Angie, Thank you for your warm welcome. I like it here already. You are about the age of my youngest son. He's 46.

I am sorry you're so ill at such a young age. I got sick with CFS/FM at the age of 38 so I know what you're going through.

If it weren't for my husband, I don't know what I'd do. There's no way I could live alone. I know you don't want to move and have to live with mom and grandma but we're both very lucky to have family.

Some of the people I've talked to with our illnesses are all alone. I can't imagine being alone, not being able to work and having to live on disability.

Did you have brain surgery? I had an MRI last year and found out I have a small cyst on my brain but the neuro doesn't think there's any need to worry about it. I am going to get a second opinion though. Hope you feel better. Memaw12
Chronic Fatigue Syndrome, Fibromyalgia, OA, Hypothyroidism, Diabetes Type 2, IBS, Neuropathy, Ocular Migraines.

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 5/19/2013 11:53 PM (GMT -7)   
Yes, I did memaw12. had a meningioma the size of a baseball taken out right before Christmas 2002. I came back benign and i was back at work in 3 1/2 weeks which was Great! I didn't start having symptoms again until 2005 and I had just had an MRI so my neurosurgeon said no way is it causing any problems, they said the same thing before and after the radiation I had in 2008 and the new tumor we just found, the difference is I believed them in 2005.
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.

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 5/20/2013 8:10 PM (GMT -7)   
Angie, You've been through so much. I'm sorry you've had to suffer so. I had some episodes with my eyes last year and thought I was having a stroke.

I went to the ER and they admitted me for 24 hour observation. They finally had me go for an MRI, Carotid Artery Ultrasound and Echocardiogram. I also had an extensive eye exam a few days later.

The result was that they weren't sure what caused the viual disturbances but the symptoms were like ocular migraines. That seems to have been the diagnosis. I was also told that there was a small cyst on the left frontal lobe of the brain.

The neuro I went to later on said it may have been there a long time but I am going to get a second opinion. He said it was nothing to worry about however. Memaw12
Chronic Fatigue Syndrome, Fibromyalgia, OA, Hypothyroidism, Diabetes Type 2, IBS, Neuropathy, Ocular Migraines.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 5/21/2013 4:24 PM (GMT -7)   
Memaw12, I have had ocular migraines for years & just hate them. The good thing is they only last about 30 to 45 minutes & then they are over. I do get really fatigued after but that is par for the course. lol!

I have a cyst on my pineal gland in the back of my brain. I saw it on a CT scan & it was quite interesting. That was about 3 years ago it was found & it hasn't caused me any problems that I know of. I have often wondered if it was part of my problems with sleep as the pineal gland makes melatonin for sleep. No one seems to know for sure.

You should get a second opinion just to make sure. I hope you have a nice day. 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 5/21/2013 4:38 PM (GMT -7)   
Angie, I am sorry you are going through this. You said you had radiation in 2008 was a tumor found & was it benign? Now they have found another one? It would be so frustrating to have to deal with this & very scary. Even though this is a CFS forum we want to be here for you in all that you are going through. Please keep us posted. What do you have to do now & do they know what is causing this? Know that you are in my prayers. 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

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 5/21/2013 5:58 PM (GMT -7)   
Denise, I think it's interesting that we both have brain cysts, CFS, FM, and ocular migraines. I also have the IBS problems, neuropathy, OA, high BP, diabetes2 and pelvic prolapse.

I think the brain cyst could be somehow connected to the ocular migraines and maybe the CFS/FM. I wonder which came first? All this stuff we suffer with has to have a cause somewhere. It's not our imagination!

Hope you're feeling well today. Hugs, Memaw12
Chronic Fatigue Syndrome, Fibromyalgia, OA, Hypothyroidism, Diabetes Type 2, IBS, Neuropathy, Ocular Migraines.
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