Feeling really at the edge

[SighNoMore]

I just can't handle this. I live every day in fear. The sweating, and now this horrid rash. I am so afraid I am being misdiagnosed. So many people talk about having a rash and being told it is something else. I just don't know what to do.

I just want all the pain and fear to end.

Can you give us one GOOD reason you are rejecting the medical advice you received that you do NOT have lymphoma?

Gcalex, they seem like good reasons to me after reading the lymphoma boards in the past where people say they had rashes and were sweating and their doctor missed something. That seems like reason enough. However, I realize that I am NOT in a rational place so perhaps that is clouding my thinking.

Hohum, thank you! Seriously I appreciate your words, so much! It is so hard when you are living in fear and anxiety to think rationally about symptoms you are facing. I appreciate you stating the info about your wife's co-worker (prayers for him!), and the percentage info. I think that makes a lot of sense. It is just scary when you read lymphoma boards, etc and so many say I itched for years, had rashes, etc and then wham I was diagnosed with lymphoma. I think that is where my fear comes from.

The PA even wrote out I don't have lymphoma, but then of course the rash intensified and I freaked out. My derm who knows who anxious I am even warned me the rash may get worse, and I could come in at any time, but she didn't want me to worry. You would think I would find solace in that, but then I think all those other people had misdiagnosis so why can't I?

[gcalex]

So you believe some anecdotes on the internet and not your doctor?

[SighNoMore]

Going with your line of thinking, yes! Apparently I do. I used to have a great mistrust of doctors and I think I still have some of that. The strange thing about my HA is that I am very natural in my approach of treating things, etc. I do not run to the doctor outside of check ups, etc until recently. I would go maybe once or twice a year. Now I feel like I need to go all the time, and do my best to fight that urge.

I know it is backwards to say I don't trust them, yet want to run to the doctor for reassurance. It is maddening.

[gcalex]

You are deep in the throes of confirmation bias -- you are tuning out everything that says you are fine and choosing to believe absolutely unreliable anecdotes from people you know nothing about, including whether they are being truthful. 

[SighNoMore]

After I typed my response, I thought how do I know these people are even telling the truth. I have been around the internet and message boards long enough to know that some people aren't truthful and say they have horrid diseases, etc when in fact they do not.

Thank you for reminding me of that. I appreciate you countering my what if thought. I need it! I am still afraid, but trying to remind myself of the fact that my anxiety is trying to get the best of me. It is an uphill battle.

[SighNoMore]

So do I just say this rash is some weird stress reaction or something from my pregnancy and deal with it? I mean the "what if it is the rash/itchy skin" they mention in the lymphoma symptoms is eating at me. I can't shake it.

[gcalex]

Millions of people have rashes.  I am guessing in very few instances is it an indicator of a serious disease.  Same with night sweats, just look around you on this forum.  Stop worrying about it, if you can.

[sassparella]

How's the rash and the sweats? I hope you're getting some relief from them, it's awful what our body and mind can do to us.

Hoping you're well

[SighNoMore]

Hey Sass, thanks for checking in on me. I am still itching. Not as severe as I was, but still there. It seems like it just randomly hits out of nowhere. For whatever reason the sweating is better. I have been shocked as the sweating is a near constant for me. The reprieve has been nice, but I still worry about it starting again and the cancer fear is always looming.

Just trying to focus on the positive.

[kmwondering]

I had a horrid pregnancy (puppps) rash. I'm sorry you are going through this but a lot of women get it. How far along are you?

[SighNoMore]

I am 17 weeks. My fear is that my belly doesn't really itch (it does occasionally), but my legs are the main culprit. Of course I have read all sorts of horror stories about lower legs itching with lymphoma so that is why my mind goes to something sinister.

Did your legs itch? Did your rash wax and wane?

[SighNoMore]

We really are so much alike - I too cannot dismiss physical symptoms as being nothing, and think that every ache, pain, rash, etc is something awful.

Try to look at it this way - you have one, maybe two, symptoms on a long list...on the other hand, you DO NOT have, let's say, a half dozen or more symptoms on that very same list. This is where the logic part comes in, right :)

Easy to say, incredibly hard to do.

I agree with you. The physical symptoms I do have seem to line up with what I fear--lymphoma. I realize I don't have several other symptoms, and the PA even pointed that out, but all my brain can think is, but I do have these TWO symptoms so that must mean something bad.

[Hohum]

It is just scary when you read lymphoma boards, etc and so many say I itched for years, had rashes, etc and then wham I was diagnosed with lymphoma. I think that is where my fear comes from.

We've probably read the same posts on the same forums, sadly most of us with the Lymphoma fears likely have... I went through a similar episode about 6 months ago - two small nodes on my neck which were completely unexplained, both had some of the characteristics for Lymphoma. Turned out to be absolutely nothing. Still have them, they haven't changed at all, so I no longer worry about it!

Try to remember that the message boards you're reading are support groups for those WITH lymphoma. You don't get to read about the millions of people who have a rash, itching or some night sweats on a daily basis which is just completely normal and not related to anything sinister.

[SighNoMore]

It is just scary when you read lymphoma boards, etc and so many say I itched for years, had rashes, etc and then wham I was diagnosed with lymphoma. I think that is where my fear comes from.

We've probably read the same posts on the same forums, sadly most of us with the Lymphoma fears likely have... I went through a similar episode about 6 months ago - two small nodes on my neck which were completely unexplained, both had some of the characteristics for Lymphoma. Turned out to be absolutely nothing. Still have them, they haven't changed at all, so I no longer worry about it!

Try to remember that the message boards you're reading are support groups for those WITH lymphoma. You don't get to read about the millions of people who have a rash, itching or some night sweats on a daily basis which is just completely normal and not related to anything sinister.

Thank you for that! My husband told me the same thing! He said the news, the internet, blogs, etc don't report the cases of it turned out to be nothing. He said what you read and hear are the cases where something is wrong. I try and remind myself of this, but I need to remember that, and I need to remember to not read those boards! It does me NO good!

I also am trying to remind myself that I have fair skin, allergies, and I will itch and things will show up more readily on me than others. I don't even have any external nodes swollen the least bit, yet I worry that they are coming. Such faulty thinking!!

[SighNoMore]

Ugh...the stupid sweating at night thing is about to send me over the edge. I am going nuts. Things seemed better, but now I was so sweaty last night. I am just so scared. I don't know what to think....the sheets were not drenched, but my legs were pouring sweat as was my chest. I am so scared.

[SighNoMore]

I am at the end if my rope with this. I just can't tolerate these sweats any more. I feel it is just a matter of time before I get really sick. I have been doing this for a year, and I am exhausted. I keep getting the freaking sweats, and I am scared. Doctors say well your blood counts are fine so you are ok. You can't diagnose lymphoma with a blood test so I don't know what else to do.

So tired....

[vardnas]

Do you really, truly believe lymphoma moves SO SLOWLY that after a year of night sweats, other symptoms would not have appeared? Or that you would not feel more "sick?" I mean really, truly, honestly, do you think that?

[SighNoMore]

Do you really, truly believe lymphoma moves SO SLOWLY that after a year of night sweats, other symptoms would not have appeared? Or that you would not feel more "sick?" I mean really, truly, honestly, do you think that?

Honestly I have no idea. I know that sounds like a cop out, but I have no clue on the disease progression. I mean I assume it would move faster, but then you start questioning yourself and see people who had symtoms for years. Ugh I just don't know anymore...

[SighNoMore]

And what I mean by symtoms for years are the people who say I had sweating for nine months, itches for two years, etc.

[SighNoMore]

And I get rashes and itch frequently...

[floridaguy65]

Hi SNM:) Well, you're preggos....congrats, but this can surely amp up our worries. Of course, I don't have first hand experience of this....but this has been echoed numerous times throughout The AZ:) We worry about our kids (born and not yet quite here:) No way getting around this...so it is best to not try, that much. Simply, to me, we have to learn how to channel this nervous energy into a more appropriate outlet. And, never will it be appropriate for you to be on Lymphoma forums or scouring the internet about Lyphoma symptoms or Lymphoma survival rates or how to beat Lymphoma, etc. Reasons:

1. You do not have Lymphoma. Yes, it can be a little tricky in identifying what type of Lymphoma might be present. But, OVERWHELMINGLY, Docs and med testing points out that something is askew - very askew usually. And, THEN, they keep digging unil they find out what's going on. There is no 'THEN', in your case. And no matter how much anxiety fudges with us, we cannot just make a 'THEN' happen....no matter what we believe....no matter what we feel....no matter - no matter - no matter - no matter.

2. You have HA / Anxiety. Googling and internet self-diagnosing is a NO-NO. And, never will it be a YES-YES. Never...never....never. There will be no lasting solace when we give our amped up mind the fuel it needs to keep us locked up in a fear cycle. Continue with bad habits and fear cycles, overwhelmingy, will continue...and they ramp up too. Stop bad habits and we have some hope and something to build a self-reassuring foundation upon. It really is as simple as that. Simple to get there? Likely not. But, ask yourself where doing what you have been doing has led you? We have to be candid and have some self-realization in our assessment. Who cares where we are right now as we sit - or what we have done in the past, really? I know that's not entirely true - just trying to make a point:) But, what really matters is what we do from here on out:) Yesterday is gone. Today is still here. Tomorrow is coming, whether we are anxious about it or not. What really matters is our actions and habits today....then tomorrow will be another today (and we can focus on our habits and actions of that 'today':)

Peace and Feel Well:)

[Hohum]

I don't think it's going to help your anxieties by discussing the disease any more, as I really, REALLY don't think that you have lymphoma. That said though, everything I have ever read or people with lymphoma have told me, is that the night sweats are DRENCHING - as in, they needed to get up and change their clothes and the sheets at least once a night. It doesn't sound like you have that.

Cancer support forums/blogs are not a good source of information. All you're going to get are a lot of HA-reinforcing anecdotes from people who may be mistaken, made a typo, generalising, flat-out-lying. I'm sure that you have typed "lymphoma night sweats" into Google, then spent hours freaking yourself out by reading stories of people who were diagnosed. This is the absolute worst thing you could possibly do for anxiety!

My advice would be to try and break the cycle for a week or so. Ban yourself from looking up symptoms on Google, reading lymphoma or other cancer websites, self-checking for lumps, etc etc. Try for 15 minutes first, then an hour, then a day, then a week...you get the idea.

I don't want to come across like I'm dismissive of your concerns because I'm really not. I, too, have lived the Lymphoma fears - everybody who responded to your thread knows what your mindset is right now. But I also know that you need to figure out a way to face these fears, and move on. Every day spent petrified of losing your life to cancer, is a day of your life lost to anxiety!

[floridaguy65]

Hohum - wonderful reply!:)

I don't think it's going to help your anxieties by discussing the disease any more, as I really, REALLY don't think that you have lymphoma.

Little factual info hits home - or sticks to long - when we are struggling with hyper anxiety. Reassurances fade quickly, or never even take root to begin with. Our reception of reassurances and acceptance of stats and odds and likelihoods and Doc statements is filtered through our true, major underlying issue - mental health challenges. An overwhelming amount of HA peeps (me included) are (or were) nearly textbook in their presentation of anxious feelings and intrusive thoughts and physical manifestations. It's not hard really to empathize when we are fellow HA peeps. What can be the challenge is getting HA peeps to, ultimately, embrace that is their own actions and habits that are the major driving forces in keeping them locked up in fear cycles.


I don't want to come across like I'm dismissive of your concerns because I'm really not.

HA peeps have a difficult time with their OWN cases, most often (which is understandable....this is OUR lives:). But, it is very comforting, and it holds great underpinings to a healing path, that most HA peeps have much more clarity and insight into other peep's circumstances and trials. We are not being dismissive....we are trying for some gentle guidance, most often, as we all have been in a 'bad place', so to speak, ourselves. Gentle guidance doesn't always have to be done with 'hand holding', either. Anxiety peeps, when amped, are not seeing things with clarity and reason, very often. Reassurances, tend to do little...so reassurances can't continue to be given out time and time again without the framework being given of what is, likely, needed to learn how to best help ourselves. And, this isn't just one person's understanding of what tends to help....there is a plethora of information and history and experience (a lot of it our own) that guides us to a lot of these underststandings, IMHO.

SNM, what's going on these days in your anxiety help? Self-help? How's your health, overall, from what your Docs says....your GP and your OB-Gyn?

Peace and Feel Well:)

[SighNoMore]

Hohum - wonderful reply!:)

I don't think it's going to help your anxieties by discussing the disease any more, as I really, REALLY don't think that you have lymphoma.

Little factual info hits home - or sticks to long - when we are struggling with hyper anxiety. Reassurances fade quickly, or never even take root to begin with. Our reception of reassurances and acceptance of stats and odds and likelihoods and Doc statements is filtered through our true, major underlying issue - mental health challenges. An overwhelming amount of HA peeps (me included) are (or were) nearly textbook in their presentation of anxious feelings and intrusive thoughts and physical manifestations. It's not hard really to empathize when we are fellow HA peeps. What can be the challenge is getting HA peeps to, ultimately, embrace that is their own actions and habits that are the major driving forces in keeping them locked up in fear cycles.


I don't want to come across like I'm dismissive of your concerns because I'm really not.

HA peeps have a difficult time with their OWN cases, most often (which is understandable....this is OUR lives:). But, it is very comforting, and it holds great underpinings to a healing path, that most HA peeps have much more clarity and insight into other peep's circumstances and trials. We are not being dismissive....we are trying for some gentle guidance, most often, as we all have been in a 'bad place', so to speak, ourselves. Gentle guidance doesn't always have to be done with 'hand holding', either. Anxiety peeps, when amped, are not seeing things with clarity and reason, very often. Reassurances, tend to do little...so reassurances can't continue to be given out time and time again without the framework being given of what is, likely, needed to learn how to best help ourselves. And, this isn't just one person's understanding of what tends to help....there is a plethora of information and history and experience (a lot of it our own) that guides us to a lot of these underststandings, IMHO.

SNM, what's going on these days in your anxiety help? Self-help? How's your health, overall, from what your Docs says....your GP and your OB-Gyn?

Peace and Feel Well:)

First, thank you all from the bottom of my heart!! I am in counseling, but I am not sure how that is going to be honest. The reason being is that we are tacking issues from my past that have most likely lead me to this road, but it doesn't give me here and now help if that makes sense. I feel like just because we are unraveling those issues, I don't have coping skills today to deal with these issues of HA. I am going to download some CBT stuff this weekend and try and dive in as I am tired of the anxiety trying to rule me instead of the other way around. I am extremely frustrated and scared. When you have a symptom an actual symtomp that others have witnessed it is hard to just dismiss (at least in my head!).

I have had tons of blood work in the last year, been monitored for kidney stone follow up, seen my derm as needed, and they all overwhelming say I am fine. I went to the PC last week because I was itching, rashy, and the sweats (oh the sweats!). The PC wasn't in, but I saw her PA who said that my nodes were fine, my sweats were probably increased due to the pregnancy, bad dreams, and since I have had them for a year with no other issues I was most likely fine. However, then I worry something is missed, I need a chest x-ray, etc etc...

My OB says I am doing great, baby is fantastic :) and my health is just fine. You would think that I would say woohoo and dance in the streets. Yet my brain defaults to nightsweats + Google= cancer for sure. I should know that Google gives you cancer every time.

Hohum, you are not callous or dismissive at all. I need the tough love that you, FLGuy, and gcalex have heaped on me. I need it in major doses. As I am floundering on my own, and thinking the worst.

[gcalex]

To Google is a choice.