Sorting through symptoms

[LiveAgain]

Hi, I new here. I have a POTS diagnosis, which I believe is accurate. I also have a CFS diagnosis - not sure about that one. I am not sure that I have some of the main symptoms. Can you help me sort through them?

1. - swollen or painful lymph nodes - well they don't hurt, but I have tons of small enlarged lymph nodes up and down my neck. You can feel them - they're like the size of a pea? Are these common in the general population or are they found mostly with sick people?

2. post exertional malaise - this seems to be a biggy with CFS. I don't understand this symptom. I am easily wiped out by minimal activity. For example, a trip to the grocery store will exhaust me. But I am not feeling the effects from it the next day I don't think? Rest helps temporarily, but mostly I always feel exhausted. I wake up tired and unrefreshed and pretty much push through the day this way. I have some energy in the morning, but it quickly declines. If you feel like this everyday, how can you distinguish that it was related to some activity from the day before?

3. muscle aches - it comes episodically, not a constant feeling, but I think this is common in the general population.

4. sore throat, flu like symptoms - I don't feel like I have the flu. I DO get terrrible sore throats, but only with the onset of a cold. Does that count?

Did I miss anything?

I relate so much to many of the other symptoms - especially the heightened sensitivity (light, sound, visual stimuli, smells, alcohol intolerance, heat and cold, medication sensitivity). Multiple chemical sensitivity is a HUGE problem for me. Also, the cognitive difficulties, the perception problems, the dizziness and all the autonomic symptoms. I just don't know.

Thanks,
Naomi

 

[taniaaust1]

Hard to say if you dont get clear post excertional malaise which is a distinguishing factor for many. POTS causes people to be very tired too and can give many of the symptoms that ME/CFS does including cognitive issues and the dizziness. Many POTS patients have alcohol intolerance and are more sensitive to many medicines

I dont know if MCS is more common in POTS then in the general population? or if that indicates you'd be more likely to have ME/CFS then just POTS?

sorry.. I cant be more of a help without clear ME/CFS symptoms eg if you said you had frequent viral like symptoms eg sore throats, glands going up after excertion it would be more easy to clarify ME/CFS. It does sound like you've really researched and tried to work it out.

From those symptoms I think it would be certainly hard for anyone to definately say if you just have POTS or if you have ME/CFS and POTS. I do think someone would have to be very careful before putting a ME/CFS label on you from just what you've mentioned here.

Rest helps temporarily, but mostly I always feel exhausted. I wake up tired and unrefreshed and pretty much push through the day this way. I have some energy in the morning, but it quickly declines.

Possible you could have ME/CFS maybe mild or ME/CFS which is in some control if you are taking care. Rest is can help many with ME/CFS temporarily .. rest in which one is laying or even sitting with legs up.. can of cause help POTS too. Some with ME/CFS do have more energy in the morning with the days activities taking a toll on one over the day.. same thou may happen in POTS...

One can usually tell the post exertional malaise from their normal symptoms as it is a worsening of ones normal illness state. So whatever you have normally.. you will experience it worst or with increased symptoms. This may happen 24-36 hrs after you've pushed yourself. It is possibly you are missing it thinking that its something you've just done and not realising it was caused by something you did the previous day.

If you are never iller the next day (or the day after that) after a busy for you day of activity... do doubt the ME/CFS diagnoses. ME/CFS people all experiences these worsenings and crashes....

 

[meadowlark]

Hello, LiveAgain, and welcome.

My ME/CFS developed over time, starting with daily industrial-strength migraine (which vanished when I got a fever) in the early 80s. Slowly it landed me where I am now, mostly bedbound, with POTS occurring after five minutes on my feet and Post-exertional malaise occurring if I walk more than a city block. But until two years ago, what I called post-extertional malaise featured the inability to walk or stand, vertigo, nausea, and other things--but not fever and lymph nodes. Nevertheless, the head of the infectious diseases unit at Sunnybrook Hospital in Toronto (and a highly respected veteran doctor of the AIDS epidemic) diagnosed me with ME/CFS in 2000.

Just two years ago (nine years after diagnosis), painful lymph nodes became a central part of my post-exertional malaise. So now I can check that box. But does it make me feel more "legitimate" than before? No. My post-extertional malaise has been terrible each step of the way, and my reaction to, say, a trip to the grocery store (I nostalgically remember when I could walk to my 24-hour store at 3 a.m., when I had the most energy) would produce a malaise that I knew was deeply abnormal.

I wish I were more articulate today, but I'm trying to say that ME/CFS is not a "one size fits all" condition. It's an eccentric illness. No two cases are exactly alike. For what it's worth, when I run my hand down my throat, I don't feel those swollen lymph nodes you so obviously have. When my lymph nodes act up, they they hurt like nails, and in places I never knew I had them. But do they swell? No way. I've also found that people define "flu" in different ways. To me, it always involves nausea. When I ran this thought past my friends, they said "are you kidding?"

I am not a doctor, so of course I'm not trying to diagnose you. But though most people experience a sudden onset of this illness, a subset (to which I belong) develops it slowly over time, and some of the symptoms--like POTS and PEM--can go through a "sorta-yes, sorta-no" phase. It took my ME/CFS two decades to develop--for which I'm grateful, as I was able to do a lot of important things with my life in that period. I was also worried as hell. For most of that time, there was no internet to help me find information on what might be happening to me, and my doctors were all mystified. So all I did was soldier on, thinking "I know there is something seriously wrong with me, but as long as I am still standing, I am going to do the things that have meaning for me." I'm so glad I did them.

I don't imagine for a minute that I know what it's like to walk in your shoes, but I certainly relate to your uncertainty and need to make sense of what's going on. A sympathetic doctor who is educated on ME/CFS is hard to find. Do you have one, by any chance?

You know, when the lymph nodes finally started to hurt and made my PEM more "classic" in character, part of me thought "at last! I can say without a doubt that I have ME/CFS!" And another part of me thought, "Oh no! Now, without a doubt, I have ME/CFS!"

Perhaps you are simply on the road to becoming a "classic case." Or perhaps something else is going on. But I admire you, Naomi, for doing what you do despite your suffering, whatever name that suffering goes by.

Sincere best wishes.

 

[taniaaust1]

Liveagain.. you are welcome at this site even if it does turn out you only have POTS as most of us here do have POTS ourselves and will understand you.

(my own CFS/ME was gradual onset but with very flu like symptoms eg fevers, headaches, swollen glands etc so classical in its symptoms... I only knew I also had POTS many years later).

 

[Enid]

No scientist here LiveAgain but all you describe classic ME - experienced and see Byron Hyde's "The Clinical and Scientific Basis of Myalgic Encephalomyalitis".

 

[LiveAgain]

My onset story is a confusing one. I was going through benzo withdrawal and at the same time became ill with some virus - classic really bad cold? symptoms and I just never recovered from there. I thought for years that it was protracted benzo withdrawal. Then in 2006 (under more confusing circumstances) I suddenly developed all the POTS symptoms. Around this time I met a friend of a friend who happened to be the nurse assisting Dr. Natelson (UMDNJ) with his CFS sleep research study. I told her about my POTS symptoms and she informed me that I might have CFS because POTS is often a part of it. From there, they diagnosed me with CFS and included me in the study. I wasn't able to complete the whole study - it was just too much for me. I am just trying to narrow my focus... trying to put all the pieces together. I trust other suffering patients much more than I trust Doctors - which is why I have reached out here. I also have a wonderful POTS support group. Thank you for welcoming me.