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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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Is losing hair common?

Messages
28
Ok I work as a new nurse and Im constantly moving fast, walking very fast. I wake up with a very sore throat and more tired and stuffy nose. This has to be CFS. I'm not too familar with what PEM is but I think this describes it to a T? Correct?
 

rlc

Senior Member
Messages
822
Hi Ryan7817, the symptoms your discribing could be fit with alot of other diseases, PEM is not unique to CFS and is found in people with alot of other conditions, although your finding it hard to work, you still can most people with CFS arn't able to work at all and alot can't leave their houses.

My advise is to do everything you can to get more tests done and don't mention CFS to any doctors you see until everything else has been properly ruled out, once you have a CFS label put on you it becomes almost impossible to get futher testing done and the majority of doctors will consider that it means you have a mental problem.

I was given a CFS label and it has taken me 18 years of pointless suffering, until it has been proved i don't have it!

All the best
 
Messages
97
Location
Philadelphia, PA
Hi Ryan,

You really need to rule out EVERYTHING before a diagnosis of ME/CFS. You're a young woman - and it could be a ZILLION different conditions.

If your doctor isn't listening to you, and/or you don't feel like you're getting enough referrals or tests - FIRE HIM!!! I'm SERIOUS!!! RIGHT NOW!!!

As long as you have insurance (which as a nurse, I'm assuming you do), you can change your primary care and see someone else for a small co-pay. If you need help getting to appointments, enlist a friend or loved one or parent!

Also, did you look on the good doctor list? A sensitive ear would probably be useful... even if you wind up having something other than ME/CFS.

Also, since you are in the medical field, perhaps your colleagues can recommend GPs that they've been happy with?

Sending you hugs.
 
Messages
28
Where do I find this good doctor list? I live in Sacrmaneto Ca and looking for a good Doc. I have a ppo, blue shield to be exact. Thank you for the warm invite its been extremly hard of lately to manage to get up and ready for work. The Day i stop working will be the day I shoot myself. I will never give up
 

rlc

Senior Member
Messages
822
Hi Ryan7817, love the no surrender attitude! put the same drive into getting tests done and hopefully they'll find the answer and it will all be over soon. Sorry can't help in regards to who's a good doctor in your area i live in New Zealand. Jaxinthecity is right! fire all doctors who don't help properly, you pay them so make sure they give you what you need. You should of had at least 30 tests done by now!

All the best
 
Messages
877
The Day i stop working will be the day I shoot myself. I will never give up

Hey Ryan,

Sounds like you need to find a doc to help diagnos you correctly.

I have had CFS for 25 years and much of what I learned I think would apply to any disease. That is learn about Avoiding stress, practice a good diet, get some mild excercise(without post-exrtional mailaise, like yoga), and relaxation.

Stress can make CFS or any illness worse for that matter. Learn to avoid getting over stressed and over tired. take a vacation, sleep in, go home early, veg on the couch, give yourself a break and don;t break youself.

Another thing is diet. In my mind, diet is the single best thing one can figure out. Processed foods, sugar, lots of caffine and alcohol can make syptoms worse. anything in a box or can or made iin a labratory instead of on the farm is probably dangerous. Maybe swap out some green tea for coffee if you have to do caffine.

Anthoer thing that can help is excercise depending on who you are. No need to push yourself to post-exertianl mailaise but maybe some yoga as a form of stress relief and meditation. Tyr to relax a not dwell to much on being sick. That will just make it worse.

finally once you have got your diet in order, and learn to manage your stress in a healthy way, think about vitamins.

Vitamins are tricky and not all help, but if you can learn what works for your body maybe you can find some that work for you. I would suggest a trying a few basics like high quality B complex. and a good multivitamin. I would stay away from herbs and all the fancy stuff at first. Think about how to simplify your life for now. Rich Van k has written some good safe stuff on vitamins. look him up in the methylation section.

If you can rule out all the the other treatable medical problems, which might take a couple years and many docotrs, and figure out you do have a chornic disease. It is unlikely that any docotr has a magic bullet for your illness. It will probably require you learn how to manage it to some extent on your own.

Hope I gave you some ideas to explore. But get some good medical help from a doctor to try and rule out all the other stuff before diagnosing yourself with CFS.

Good luck
 
Messages
10
Location
UK
Hiya! Dont lose hope!! I've had m.e for 26yrs now! and I'm only 31! was ill from the age of 5 and have been through lots if bad dr's!
They just gave me lots of antibiotics which game me candida and then leaky gut! Its seems most m.e people have to come off certain foods too! Like Sugar , wheat, dairy , yeast! lovely diet!
I'm on thyroxin ! but I noticed a patch on my head where my hair was thinning and we found out i was low in Iron! I have bad black circles around me eyes too and they sting and get irritated like anything! I also have B12 injections which boost me up along with the iron.
You should try St.Johns wort for being low I read its suppose to be good for depression! And Milk thistle to clear out all the bad toxins. Also get your magnesium checked as when mine was low i couldnt cope and started to throw things around and got agitated! hope this helps! Rebecca
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Where do I find this good doctor list? I live in Sacrmaneto Ca and looking for a good Doc. I have a ppo, blue shield to be exact. Thank you for the warm invite its been extremly hard of lately to manage to get up and ready for work. The Day i stop working will be the day I shoot myself. I will never give up

Hopefully "shooting" yourself is just a figure of speech?! Lot's of us have lost lots of things, you will survive, keep the hope alive!

GG
 
Messages
28
Well my doctors appointment was shit. He kept trying to ask questions like have you had anything dramatic happen at that time it started. Questions leading me to try to answer questions to make me feel its stress related. Fucking soo annoying. If my hair is falling out and i have new rings of black under my eye and sore throats every morning that means its fucking physical! Then he stated the pituitary gland is not in the brain......FIRED ! I made an appointment in the parking lot to see a CFS specialist. He ordered a Thyroid antibody test and a testosterone, BTW of thyroid and T3 test came back with normal range.....
 

rlc

Senior Member
Messages
822
Hi Ryan7817 sorry to hear doctors visit was shit, been through it myself more times then i care to remember. What was your TSH level it should be under 2.5 to rule out normal hypothyroidism, most labs in the world are still using out of date referance ranges. The test to rule out central hypothyroidism is Free T4 not T3 get it checked. Good for you on firing the doctor, hope things go better with the next one get them to test for everything!

All the best
 

rlc

Senior Member
Messages
822
It's good that it's under 2.5 but i'd still be wanting free T4 done for central Hypothyroidism it can cause lower TSH! There alot of tests that need doing to rule out thyroid problems, obvoiusly that doc hadn't got a clue. Get the new doc to do test for everything! there so much that hasn't been done! and so many possible other illnesses that could be causing your symptoms.

All the best and try not to let dumb doctors get you down