Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I think I am near the end of a bad 6 week relapse. This is not an uplifting post for those seeking encouragement . Some emotional issues brewing with me for about a year seemed to collide and (as I usually do) ever so gradually found myself struggling. I know now that I've developed an anxiety disorder from all the symptoms. My long standing POTS has been severe, even dizzy and unable to look in my purse or pick something up.
My hot flashes have become heat strokes induced by slightest movement, like tilting my head back a little. Often there is a great wave of nausea too.
I walk a long distance to get from my apt to parking garage; use a walker or folding stool. My weakness always makes it a terrible ordeal. It crossed my mind to inquire into a wheelchair or live temp in a care home, but were too emotionally charged to consider.
When I am not like this, I function about 70% better, so,feels like a different life.
I have some access to counseling but it is not supportive of heavy mobility issues. Dr.s - can hardly discuss, have PTSD with them. For the first time I find I've been left crying in public too often, too sick to cope even at the drug store or cafe. Even if I get better again, the relapses will return and I want to know how,to cope better. Never been so emotionally fragile , so sick of looking for help.
Sorry this is so,scrambled, it is a real confusing time for me. Thx for Listening.
My hot flashes have become heat strokes induced by slightest movement, like tilting my head back a little. Often there is a great wave of nausea too.
I walk a long distance to get from my apt to parking garage; use a walker or folding stool. My weakness always makes it a terrible ordeal. It crossed my mind to inquire into a wheelchair or live temp in a care home, but were too emotionally charged to consider.
When I am not like this, I function about 70% better, so,feels like a different life.
I have some access to counseling but it is not supportive of heavy mobility issues. Dr.s - can hardly discuss, have PTSD with them. For the first time I find I've been left crying in public too often, too sick to cope even at the drug store or cafe. Even if I get better again, the relapses will return and I want to know how,to cope better. Never been so emotionally fragile , so sick of looking for help.
Sorry this is so,scrambled, it is a real confusing time for me. Thx for Listening.
Your comments mean so much to me! I feel so alone with this illness . Thx from the bottom of my heart
1. Are you taking any medications? You may feel better if you stop taking them. CFIDS is a neuro-immune disease. Your immune system gets very upset if you stuff drugs into it.
2. CFIDS is triggered by both physical and emotional challenges. Keep your emotional life up to date and in good order, otherwise that alone can bring you down.
3. You do not have weakness; you have tiredness. It's all a lack of energy, but it will help if you name it right. You get crazy tired from little things that don't make anyone else tired. The don't call it chronic FATIGUE for nothing.
4. There is a small field of study called PNIE--psychoneuroimmunoendocrinology. Your feelings, your nervous system, your immune system and your hormones are all interconnected. Therefore, if you take the load off your feet (your nervous system) then you will also be lifting the load from your emotions. Getting a wheelchair can ease your emotional problems, but you've got to get a power chair. If you are so sick that you need a wheelchair, then you are too sick to push it.
Just a couple of ideas that might help you--I hope, I hope.
Again, all your comments are helpful. MollyHope if you are still in the hospital, let us know how we can support you. It must be scary. Hugs
I broke down in front of a doctor a few days ago and it surprised both of us.
No reason to be disappointed with yourself Aussie. We certainly did nothing to bring this on or land in these awful circumstances
Thank goodness we have each other to talk to.
Hugs everybody..
Have you considered a caregiver? It doesn't have to be long term. There are places that will send someone over for the day. I'm not sure if you can spare the $, but if you can that would help you a lot. A good one will help you but allow you whatever independence you wish to maintain.
Most grocery stores have delivery now. Most of them do free delivery for the first order. At least that would be one less reason to make that trek to the parking garage.
((((Hugs))))) Give yourself some extra comfort when you can. From foods to cozy blankets to loved music/movie/book.
A few choices in soft ice packs would be nice too. I've seen some that go around the back of your neck.
Some mint tea would be nice wouldn't it? It's comforting and cooling at the same time. It doesn't hurt to put some on a wash cloth and pat your face either. I've done that in hot weather, it's really nice.
(((HUGS))) I hope this all calms down for you soon. Until then you can come cry with us here.
I know that calling it weakness is an attempt to get people to understand that it's not what they feel but, still, it is not weakness. When the doctor says "squeeze my hand" you know that you can call up extra effort and do it, but that you shouldn't have to call up extra effort. You're not weak; you're tired.
Here's what to say: ME/CFIDS/CFS is an inflammation of the brain, perhaps caused by a virus. It is an autoimmune disorder in which physical, mental or emotional stress cause neuroimmune exhaustion. The fatigue is not the result of physical exertion and is not relieved by sleep. Postexertional neuroimmune exhaustion means you experience unexplained and disabling fatigue after simple activities.
Just keep hitting them with that "postexertional neuroimmune exhaustion" thing.