Aa
fatigue, weight loss, night sweats, migratory pain, palpable nodes
This is long, it is also posted in undiagnosed symptoms. I'm posting here as well because some of the symptoms seem to fit those of blood cancers, but because blood work was normal I'm just not sure... thanks for any advice you can offer.
Need advice please. Rash on trunk with concentration on stomach and breasts (rash was pink/red and hurt when clothes touched it, not pimply and not in a band or just one side of body) and sudden joint pain beginning 6/8. Went to urgent care on 6/12 because rash was worse and so fatigued I was having a hard time functioning. Normal blood work. IV to hydrate me, motrin for pain-dx'd as viral exanthem. Rash, fatigue, migratory joint pain continued. Went back to urgent care on 6/19; still had rash, vague joint pain, but both sides of neck hurt so bad from jaw to collar bone that I'd been sleeping with heating pad on neck for two nights--still very fatigued. Dr was dismissive, did do blood work though (all normal, mono spot negative, strep culture negative). Sent me with 5 days of prednisone and told me urgent care is for life threatening emergencies, not diagnostics. Started prednisone on 20th in a.m., had worst back pain of my life late that evening. Almost went to e.r. but took 4 motrin and went to bed with heating pad. 6/21 I was still having bad back pain moving into hips/glutes; sides of neck slightly tender but not bad. 6/22 sides of neck hurt again. Feel like glands under jaw are swollen. Definitely have swollen lymph nodes on right side of neck, not huge, but palpable when they never had been before. Also have one that is palpable in collar bone hollow on left side. 6/24, rash is flaking now (prednisone worked?). 6/25, skin pain so bad I can't have sheet on me, it hurts to sit/lay, etc. 6/26 body aches and skin pain, still have swollen lymph nodes, woke up drenched.
I stopped making calendar entries on the 26th because it was pointless. Whatever this is doesn't want to go away. Im tired, have nightly sweats that wake me shivering and I have to change, I've lost 13 lbs in 4 weeks, for the last week my right inner thigh/groin hurts when I'm sitting or laying down and the ball of my right foot hurts at rest and when I walk. Also have mild pain at bottom of ribs on both sides and aching under armpits. Have not had a high fever that I know of, it's been running 99.5-100 in afternoons/evenings. Very fatigued still, still having joint pain but not as severe as first couple weeks. Neck is tender on side still tonight. Any ideas? I have no insurance and am not immersed in having a doctor be dismissive with me again and then pay a $1500 bill. On the other hand if it could be serious, I don't want to wait too long. Would a viral exanthem, as the first doc said, last this long? When will it go away?
No clue if it's related, but one week before the initial onset, I had a headache that started like someone driving an ice pick in my head for about 2 seconds at a time every 5-10 minutes for about three hours. This stopped and later that night I woke up with a headache so severe I was bawling. I took two aspirin and 2 motrin and then drank a bottle of water. I was home from work on the couch the entire next day sleeping. Felt great the following days until the rash/joint pain began.
I normally have a couple cold each year and might miss two days of work every 12 months. I've never been sick like this before.
Need advice please. Rash on trunk with concentration on stomach and breasts (rash was pink/red and hurt when clothes touched it, not pimply and not in a band or just one side of body) and sudden joint pain beginning 6/8. Went to urgent care on 6/12 because rash was worse and so fatigued I was having a hard time functioning. Normal blood work. IV to hydrate me, motrin for pain-dx'd as viral exanthem. Rash, fatigue, migratory joint pain continued. Went back to urgent care on 6/19; still had rash, vague joint pain, but both sides of neck hurt so bad from jaw to collar bone that I'd been sleeping with heating pad on neck for two nights--still very fatigued. Dr was dismissive, did do blood work though (all normal, mono spot negative, strep culture negative). Sent me with 5 days of prednisone and told me urgent care is for life threatening emergencies, not diagnostics. Started prednisone on 20th in a.m., had worst back pain of my life late that evening. Almost went to e.r. but took 4 motrin and went to bed with heating pad. 6/21 I was still having bad back pain moving into hips/glutes; sides of neck slightly tender but not bad. 6/22 sides of neck hurt again. Feel like glands under jaw are swollen. Definitely have swollen lymph nodes on right side of neck, not huge, but palpable when they never had been before. Also have one that is palpable in collar bone hollow on left side. 6/24, rash is flaking now (prednisone worked?). 6/25, skin pain so bad I can't have sheet on me, it hurts to sit/lay, etc. 6/26 body aches and skin pain, still have swollen lymph nodes, woke up drenched.
I stopped making calendar entries on the 26th because it was pointless. Whatever this is doesn't want to go away. Im tired, have nightly sweats that wake me shivering and I have to change, I've lost 13 lbs in 4 weeks, for the last week my right inner thigh/groin hurts when I'm sitting or laying down and the ball of my right foot hurts at rest and when I walk. Also have mild pain at bottom of ribs on both sides and aching under armpits. Have not had a high fever that I know of, it's been running 99.5-100 in afternoons/evenings. Very fatigued still, still having joint pain but not as severe as first couple weeks. Neck is tender on side still tonight. Any ideas? I have no insurance and am not immersed in having a doctor be dismissive with me again and then pay a $1500 bill. On the other hand if it could be serious, I don't want to wait too long. Would a viral exanthem, as the first doc said, last this long? When will it go away?
No clue if it's related, but one week before the initial onset, I had a headache that started like someone driving an ice pick in my head for about 2 seconds at a time every 5-10 minutes for about three hours. This stopped and later that night I woke up with a headache so severe I was bawling. I took two aspirin and 2 motrin and then drank a bottle of water. I was home from work on the couch the entire next day sleeping. Felt great the following days until the rash/joint pain began.
I normally have a couple cold each year and might miss two days of work every 12 months. I've never been sick like this before.
COMMUNITY LEADER
Well, of the very many things that can be discussed, which would you like to focus on first?
Some quick signposts for now:
1) weight loss
there is a difference between cachexia (wasting) and anorexia (but not the nervosa type)
2) many people starting with CFS/ME have said, "I just want my life back". Btw, many with CFS also say they wish they hadn't tried to push their way through it, as that just dug a much deeper hole. IOW, rest was the better choice.
3) testing: it's possible to spend a small fortune on tests, and not get a Dx - or to get a DX of exclusion - or find there is no effective Tx except maybe for what you can do yourself
4) a cancer can do almost anything, but so can the immune system
5) The fact that you did get relief from aspirin/ibuprofen actually gives a good clue. It was the wrong thing to do in the general population, but possibly the exact right thing to do for you in particular.
Probably, in you a meningitis pathogen triggered a persistent immune activation. You're the wrong age for the link I'd posted, but there will be similar conditions. On many/most of those immune conditions, you'll read "no one knows precisely what causes it".
Your logical and methodical approach will be a big asset for you. Sorry to say, but it might be a long road.
Some quick signposts for now:
1) weight loss
there is a difference between cachexia (wasting) and anorexia (but not the nervosa type)
2) many people starting with CFS/ME have said, "I just want my life back". Btw, many with CFS also say they wish they hadn't tried to push their way through it, as that just dug a much deeper hole. IOW, rest was the better choice.
3) testing: it's possible to spend a small fortune on tests, and not get a Dx - or to get a DX of exclusion - or find there is no effective Tx except maybe for what you can do yourself
4) a cancer can do almost anything, but so can the immune system
5) The fact that you did get relief from aspirin/ibuprofen actually gives a good clue. It was the wrong thing to do in the general population, but possibly the exact right thing to do for you in particular.
Probably, in you a meningitis pathogen triggered a persistent immune activation. You're the wrong age for the link I'd posted, but there will be similar conditions. On many/most of those immune conditions, you'll read "no one knows precisely what causes it".
Your logical and methodical approach will be a big asset for you. Sorry to say, but it might be a long road.
I'm sorry for the auto corrects above. Hopefully you're fluent in fatigued typing...
>>How big is the largest node?
It feels like it's about 1/2" long and not quite as wide, do not big--it is "mushy" feeling and sort of blips back and forth under my finger. It does not feel fixed in place to the skin, but it does feel fixed to deeper tissue. The others feel like frozen peas in size, shape and hardness.
" Had you been swimming then?
Had you been traveling or been around someone who had been traveling? Had a chest cold?"
No, to all of the above
"Have you read about viral meningitis?"
I had come across that while reading, but assumed that the neck pain would be posterior, not lateral. I have no idea if that assumption is accurate. Also, I suppose I thought that would come with high fever but am not sure.
"Were you extremely stressed or otherwise immune suppressed at onset?"
I have a somewhat stressful job but at onset it had been fairly calm at work and things had been less stressful than in previous quarters.
"Do you have a family history of odd immune conditions?"
Family history includes high blood pressure, degenerative disc disease, lung cancer, breast cancer, pancreatic cancer, underactive thyroid. That history includes grandparents...
"Did you have the ESR or CRP blood test (for inflammation)?"
No, those were not done.
" What is your age?"
33 F, married, one child (hubby and daughter are not ill)
"How many mgs of pred were you on?"
40mg/day for 5 days
"Also, in general, a cerebral hemorrhage can come along with "the worst headache you've ever had" and so taking aspirin or any other blood thinner would be the exact wrong thing for anyone to do."
That is good information. Thank you, I will be sure if I'm having a heartache like that ever again that I don't take aspirin. At the tone all I could think was make this go away.
I am going to take a look at the link you posted. Thank you for the response, I am so exhausted and just want to clean my house ad's go to work everyday again. It's scary not knowing what is wrong, and of course, Google just scares the crap out of you even more when you search weight loss, night sweats, fatigue, joint pain, palpable nodes. Hopefully it's just some weird virus, but I feel like I'm not present for life right now. It's frustrating to say the least. You have been very helpful.
It feels like it's about 1/2" long and not quite as wide, do not big--it is "mushy" feeling and sort of blips back and forth under my finger. It does not feel fixed in place to the skin, but it does feel fixed to deeper tissue. The others feel like frozen peas in size, shape and hardness.
" Had you been swimming then?
Had you been traveling or been around someone who had been traveling? Had a chest cold?"
No, to all of the above
"Have you read about viral meningitis?"
I had come across that while reading, but assumed that the neck pain would be posterior, not lateral. I have no idea if that assumption is accurate. Also, I suppose I thought that would come with high fever but am not sure.
"Were you extremely stressed or otherwise immune suppressed at onset?"
I have a somewhat stressful job but at onset it had been fairly calm at work and things had been less stressful than in previous quarters.
"Do you have a family history of odd immune conditions?"
Family history includes high blood pressure, degenerative disc disease, lung cancer, breast cancer, pancreatic cancer, underactive thyroid. That history includes grandparents...
"Did you have the ESR or CRP blood test (for inflammation)?"
No, those were not done.
" What is your age?"
33 F, married, one child (hubby and daughter are not ill)
"How many mgs of pred were you on?"
40mg/day for 5 days
"Also, in general, a cerebral hemorrhage can come along with "the worst headache you've ever had" and so taking aspirin or any other blood thinner would be the exact wrong thing for anyone to do."
That is good information. Thank you, I will be sure if I'm having a heartache like that ever again that I don't take aspirin. At the tone all I could think was make this go away.
I am going to take a look at the link you posted. Thank you for the response, I am so exhausted and just want to clean my house ad's go to work everyday again. It's scary not knowing what is wrong, and of course, Google just scares the crap out of you even more when you search weight loss, night sweats, fatigue, joint pain, palpable nodes. Hopefully it's just some weird virus, but I feel like I'm not present for life right now. It's frustrating to say the least. You have been very helpful.
COMMUNITY LEADER
To be clear, I wouldn't go to the ER to investigate your current symptoms.
But if headache returns, or there is feeling of a heart attack, or very low blood pressure, or anything that seems immediately alarming, then you probably should go.
That said, you might have something that gets treated only with more pred and then eventually subsides. It might take some thinking to figure out what kind of doc to go to - an ID or a hematologist or immunologist... I don't know yet.
But if headache returns, or there is feeling of a heart attack, or very low blood pressure, or anything that seems immediately alarming, then you probably should go.
That said, you might have something that gets treated only with more pred and then eventually subsides. It might take some thinking to figure out what kind of doc to go to - an ID or a hematologist or immunologist... I don't know yet.
COMMUNITY LEADER
Hi, first off I'd avoid the ER in the future. It's very true what you were told, and they are not the docs to go to for a mystery immune condition since they wouldn't really know about whatever it is that you have. Just a waste of your money from here on, though you did thankfully find out that you weren't in immediate deadly peril (that is what they are very good at identifying). I'm guessing that likely hasn't changed, *unless* the headache returns.
As to lymphoma: a CBC can be and usually is normal, especially at first. But lymphoma nodes usually aren't painful. They're not going to pop up all over so quickly, usually. Only a biopsy can know for sure, but unless they get really large, I'd investigate elsewhere for now. The most common cause of enlarged nodes is infection.
How big is the largest node? It sounds like only around 1cm or so, from your description.
I think it probably all did start with the headache. Had you been swimming then? Had you been traveling or been around someone who had been traveling? Had a chest cold?
Have you read about viral meningitis? I'd ask on the infectious disease group, but I think that severe headache and a sore neck points to meningitis. I'm surprised the ER doc didn't mention that. I wonder if you are contagious... probably not because it's been so long, but who knows.
So from here, I'm guessing it's a matter of identifying what infectious agent you might have had, and might still have. Or, did some powerful infection kick off an autoinflammatory or autoimmune condition. Some of what you have is reminiscent of Chronic Fatigue syndrome, which often begins with a very bad virus. Were you extremely stressed or otherwise immune suppressed at onset?
So that maybe led to vasculitis. (That probably doesn't fit with lymphadenopathy, though.) Do you have a family history of odd immune conditions?
Did you have the ESR or CRP blood test (for inflammation)? You can probably get that done yourself.
Look here: https://en.wikipedia.org/wiki/Polymyalgia_rheumatica What is your age?
How many mgs of pred were you on?
That's for starters. But if you feel like a heart attack is coming on, then you would want the ER again.
-------------
Also, in general, a cerebral hemorrhage can come along with "the worst headache you've ever had" and so taking aspirin or any other blood thinner would be the exact wrong thing for anyone to do. Thankfully, it worked out well in your particular case.
As to lymphoma: a CBC can be and usually is normal, especially at first. But lymphoma nodes usually aren't painful. They're not going to pop up all over so quickly, usually. Only a biopsy can know for sure, but unless they get really large, I'd investigate elsewhere for now. The most common cause of enlarged nodes is infection.
How big is the largest node? It sounds like only around 1cm or so, from your description.
I think it probably all did start with the headache. Had you been swimming then? Had you been traveling or been around someone who had been traveling? Had a chest cold?
Have you read about viral meningitis? I'd ask on the infectious disease group, but I think that severe headache and a sore neck points to meningitis. I'm surprised the ER doc didn't mention that. I wonder if you are contagious... probably not because it's been so long, but who knows.
So from here, I'm guessing it's a matter of identifying what infectious agent you might have had, and might still have. Or, did some powerful infection kick off an autoinflammatory or autoimmune condition. Some of what you have is reminiscent of Chronic Fatigue syndrome, which often begins with a very bad virus. Were you extremely stressed or otherwise immune suppressed at onset?
So that maybe led to vasculitis. (That probably doesn't fit with lymphadenopathy, though.) Do you have a family history of odd immune conditions?
Did you have the ESR or CRP blood test (for inflammation)? You can probably get that done yourself.
Look here: https://en.wikipedia.org/wiki/Polymyalgia_rheumatica What is your age?
How many mgs of pred were you on?
That's for starters. But if you feel like a heart attack is coming on, then you would want the ER again.
-------------
Also, in general, a cerebral hemorrhage can come along with "the worst headache you've ever had" and so taking aspirin or any other blood thinner would be the exact wrong thing for anyone to do. Thankfully, it worked out well in your particular case.
Have an Answer?
You are reading content posted in the Leukemia and Lymphoma Community
An interview with the co-discoverer of one of the biggest breakthroughs in cancer research
From causes to treatment options, get answers to your questions about CML, a type of blood cancer
New drug options on the horizon may make CML, a type of blood cancer, one of the few success stories in cancer treatment
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
