Pins and needles... ongoing

Hi Stephanie,

I also recently developed edema and tingling of feet and hands, why is that you think?

My old Dr said my adrenals were bad. I switched drs over a yr ago and had all that tested and they are working fine. Have you been put on any kind if diuretic? I've had just about every test done that my Dr can think of. I need to get a MRI but haven't yet. Have you had a MRI?

I am assuming you mean an MRI of heart? I am currently seeking 2nd opinion from a cardiologist as edema can often mean heart isn't pumping effectively. So I want to do an MRI. Funny you mention the adrenal glands as my doctor suggested a cortisol test but mine was normal as well!

It is so weird how no one can figure this out! I had a sleep study and didn't show anything irregular in my heart. My Dr seems to think all this has to do with the brain. I was forgetting a lot of things. I even forgot where the drs office was one day lol. Its just all this testing costs money. I started getting tired over 10 yrs ago and just "adapted" but it got worse about 8 months ago seems like everything I get tested for has been a dead end. I still have to work and I've been an avid gym goer for 17 yrs but its getting harder and harder to keep up. And now that I think about it I haven't gotten an answer to why I have edema lol. Been on a diuretic for 10 yrs now. I hope your second opinion gives you some answers. Best wishes

Stephanie , heart failure is a condition diagnosed by symptoms: edema (feet ankles and legs- bloated abdomen) fatigue and tiredness and shortness of breath. Do you have any of these? Me too had a BUNCH of tests done and nothing conclusive. How old are you? I am 45

I am 44. I don'thave any shortness of breath. They put me on a cpap for very mild sleep apnea as a "trial" 3 days later all my symptoms were still there. Extreme fatigue, body aches,that horrible flu feeling and brain fog ( Iguess tthat's what it is) Ithought for sure iIhad narcalepsy but didn't anyway the respiratory therapist said all the sleep apnea was gone withe the cpap after the first night so all my symptoms were due to something else, but of course the sleep Drwanted to keep me on the cpap so now iI have to buy this dumb thing for nothing, big waste of money: ( Iwas then put on adderall, what a nightmare!!!!!!! Now im on nuvigil. It helps some. Brain fog is gone but I'm still tired , it helps but my body still aches. Guess I have to take what I can get right now. So next drs visit I'm gonna give in and do an MRI. Are you on any meds for fatigue?

Oh Ijust wanted to add, a friend of mine mentioned ms, tthat's another reason i want the brain scan, the symptoms can be somewhat similar to CFS . but I think weall just want an answer. Sorry about my ttyping

I am not on medicine no more, I too was put on Aderall and I hated it!! how bad is your edema? my doctor said no diuretics until we discover the cause(yeah good luck on that!) my skin seems to leave marks if I touch anything, or the marks of the sheets and pillow in the morning take forever to go away, not to mention socks Mark, but I never had pitted edema...does it sound familiar?

Yes at one point I had 3+ pitting edema. But I've noticed my sugar and carb consumption has a lot to do with it. Have you had a sleep study done? My new Dr wouldn't diagnose me with CFS until I did that. The one thing I found interesting from that whole ordeal is it showed I had chronic pain. Do you still work? How long have you been dealing with all this?

I worked up until last January, I was a preschool teacher, unfortunately due to this weird illness I was forced to quit, saddest day ever! Here I am 45 this month and unable to work, what a shame! I had no sleep study done as here in the States CFS is not considered a "real" illness, I was just prescribed sleeping pills...imagine that! I noticed hair loss too, I am at loss as this ordeal is quite debilitating at times, the emotional toll is huge too so my doc prescribed antidepressants too 😔

Do they know what is causing the hair loss? I will agree the emotional part is the worst. Its very hard to have part of your life taken from you and people not understanding

I'm just coming out of a depression myself. I don't want antidepressants as I have been on them many times before. They always make me feel more tired. Maybe one day they will find a cure. I always think that there are others far worse than me that have lived with this way longer. I just keep holding on to "hope" cuz with this "illness" its all we have right now. You will find out who your real friends are. And hopefully you have some good support. I've tried for too long to do this on my own. I've been to "proud" I suppose. I'm just now realizing its not my fault and if I say I can't do something it doesn't make me a failure. I have to do the best I can for myself. Letting go of doing the things you love is very hard. What I wouldn't do to feel normal again. That's why I like this site. At least there's people who can relate

Absolutely!!! Thank you for chatting with me, let's keep in touch!

OK take care

Just wondering how you are now Stephanie? I also get numbness in my fingers and have CFS.