Lost, alone, afraid, ashamed, frustrated

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New Member

Date Joined Sep 2015
Total Posts : 5
   Posted 10/11/2017 11:10 AM (GMT -6)   
I am working so hard every day to deal with the diagnoses of Chronic Fatigue and Central Sensitization Syndrome. My mind and body are alien to me now. I was diagnosed at Mayo and then sent home to referring physician who then left. The only neurologist I found after that also left and I have no doctor or support system. I find it unbelievable that in the entire Twin Cities area I can find a doctor or support group. I don't know if what I'm doing is helping or hurting me. I don't know when to push through and often cripple myself for days by doing too much. I don't know what kind of "program" to follow. I don't know if the medications I'm on are helping or hurting my situation. I wish I had anyone who understood what I'm living now.
I feel so ashamed when I look around at other people my age who are working full-time, taking care of the business of life, and also still able to go out and have fun! Taking out the garbage exhausts me. I struggle to keep up with such basic things like showering, laundry, housework. I am keeping some hobbies going as best I can. I know that I have so much to be grateful for and then the shame hits again that I'm not. I'm ashamed that I can't keep my spirits up by myself. I feel weak, angry, stupid, and worthless.

On top of all this I have depression, anxiety, and PTSD. I have done DBT therapy and try and use those skills. It has enabled me to overcome a lot and yet I can't keep paying, paying, paying for the support of being in therapy and a group.

I'm scared, too. I just keep getting more and more tired and sick. It's harder and harder to think straight. I don't know where this is all heading or how to best take care of myself.

I'm tired now. Thanks for listening.

Regular Member

Date Joined Mar 2013
Total Posts : 89
   Posted 10/15/2017 5:54 PM (GMT -6)   
I'm so sorry that you're suffering with this awful disease. I've had ME/CFS for a number of years. Please don't feel like it's your fault or that you should be doing more.

You need to take care of yourself and try not to worry about the future. You'll be okay. I have not had a doctor that understands but I still have been able to go on.
Chronic Fatigue Syndrome and Fibromyalgia since 1978. Also, O.A. IBS, Hypertension, Hypothyroidism, Pelvic Prolapse, Small Brain Cyst, Tremors, Type 2 Diabetes, Chemical Sensitivities, Sleep Disorder, Allergies, Ocular Migraines, Curved Spine, Degenerative Disc Disease.

Veteran Member

Date Joined Jun 2008
Total Posts : 731
   Posted 10/15/2017 7:08 PM (GMT -6)   
I am sorry you are feeling so lost & alone. Having ME/CFS is no picnic & we are really sick. When we become sick we will go through all of the stages of grief for all that we have had to give up. Once you hit acceptance it will get better. Not physically, at least not in the sense that your illness gets better but the lack of stress from worry & sadness helps our body's to relax & get on with life as it is now, our new life.

I do not have a Dr who really understands my illness but she is good at helping with my symptoms. A Rheumatologist diagnosed me but then turned me over to a GP from then on. I have had several different GP's over the years, some have been good some had not a clue about ME/CFS.

Sounds like you need to learn to pace yourself. When we overdo it through any kind of energy usage (physical, emotional) we end up with PEM, post exertional malaise. This is when we have used all of our energy for the next day today & crash. This can last for a few hours but most likely will last for a day or up to several months. If you don't pace your energy, you will continue to crash & it does seem to have a cumulative effect. At first I overdid it so I found myself in bed most of the time unable to do anything. Now, I rest a lot & find things I enjoy doing that don;t take too much energy. I try to get out at least a couple times a week for a little while just to be around people & away from the house.

Take care of yourself & don't think about what other people are getting to do, it is only a downer. I have come to terms with the fact that I am sick, truly sick but I want to be happy too. So that is what I shoot for when I have some energy. 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

Regular Member

Date Joined Mar 2005
Total Posts : 211
   Posted 10/25/2017 11:52 AM (GMT -6)   
I totally get it.
I was diagnosed with Lyme disease and its infections... many years ago. I now can't get rid of Epstein Barr and Cytomegalovirus ...thinking I have CFS. I also am depressed and have anxiety. Anxiety mostly about functioning in life.

I stopped working, been on antidepressants and now on a mood stabilizer Ability for depression. Legs aches, night sweats, for brain (bad), no concentration, hard to focus, organize, short term memory issues. ears ring sometimes, tremors. Trying so hard to eat well, take supplements. I also get it when you say everything exhausts you. Physical and emotional exhaustion. Also get it when you say you don't know if the meds are helping. Don't know how I feel anymore.

Forum Moderator

Date Joined Apr 2012
Total Posts : 7483
   Posted 10/28/2017 4:02 PM (GMT -6)   
Welcome to the forum

No matter what the diagnosis I think we all have this issue at one time or another, you are not alone.

Here is a link to an online support group. Scroll down to CF, they are in Alpha order.

Perhaps on of the 2,000 plus people there will have some suggestions of groups you could attend in person.

Peace and strength.

Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;
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