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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I have really screwed up now! Dr Klimas office says no new patients until late winter or early spring. He had an appt. and found out all that was wrong with his back and we all thought that was the problem and I cancelled. I really wish I had kept it now.
Any suggestions????
Susie
What to do now?
Son is so fatigued now and they have taken him off celexa and klonopin. Put him on cymbalta and neurontin. He still has slight alt enzyme and the fatigue is so bad he can barely talk.
I called Mayo clinic in Jacksonville Florida. They told me they did not have the facilities for a workup or diagnostic workup for him. (what??)
I said why? because you think it is all in his head??
If it is chronic fatigue the lady said only in MN could they find that out?? I said why do you think it is chronic fatigue? She said with pain and fatigue him on ADs. He needs to go there??
I told them I live 3 hours from you in Jacksonville florida the whole reason to get a diagnostic workup was to rule out any medical issues not phsyc.
I am pissed I have promised him we would get him some help.
He has terrible gas and feels SICK. He just feels ill all the time. He gets up and tries to go and do. Then the sick feeling washes all over him.
His ultrasound of his liver and pancreas came back fine. He says he has pains in upper right abdomen and lower groin. His back with the slipped disc and 3 or 4 ruptured ones are not bothering him.
Everbody please tell me what to do. He is my son and they are just looking at the panic disorder.
Thanks
Susie
I hope this makes sense. Do I still send him to Klimas again?
Hi Hensue, forgive me for short post but im not at my best but really want to respond. I also had severe anxiety and panic attacks at the beginning of mt illness and again before my serious relpase 3 years ago, as allready stated above this can be because of CFS. I spent 17 years being told its all in my head until my head was well and truly done in with it all -like your son. I now have a firm diagnosis of M.E and i only got that because i went to a respected M.E specialist, had the right testing and got a proper diagnosis. Now my anxiety is more or less non existent because i am taking the right supplements, pacing properly, resting and eating right and most importantly i now KNOW it is not just me being crazy but that it is real.
It doesnt matter who it is but he must get asap to a proper M.E/CFS doctor and rule M.E/CFS in or out. If you want to help your son i wouldnt faff about anywhere else except with one of the respected experts -whoever its easier to see.
Please do take care of yourself in all this too. Justy xx
as you and your son probably feel like his world is in fact being destroyed and is ending as he becomes less and less ableThe world will not end and ME/CFS will not likely go away while you wait.