Newly Diagnosed - Lymph Node Pain

[ChrisnTX]

First off, great forum and lots of fantastic information.  It's been a very rough time for me and the information here has really helped. 

I was infected in early April and tested positive early July. I delayed getting tested but knew I had been infected.  About five weeks after I got it my lymph nodes blew up and are painful. It's not constant they go down and come back but the pain is constant.  It's not horrible but achy with bouts of sharper pain.  Its also all over, backs of knees, groin, arm pits, elbows, along my clavicles and around my jaw and neck. 

I got my initial labs back three weeks ago, CD4 1013 and VL 360, and there is nothing else going on outside of HIV. My Dr left it up to me to start ART or not and together we decided that I'm going to start Stribild which I got last week and am starting this coming weekend.  His thoughts on the pain are that my body is reacting strongly to the virus and it's not a bad thing but at the same time he is unwilling to prescribe anything.

Long story short, my question for y'all is has anyone else experienced this and what helped? Also will starting ART relieve it?

Thanks

[ianmx]

good morning! sorry to hear the news, but here we are.

your infection is so new and your numbers are so well i would think this is not hiv related and art would not help.

how would you rate your mental health over these past few months? stressed about the dx? stress and depression also attack the lymph system.

ian

[ChrisnTX]

Thanks for the reply ianmx and very insightful.  My mental state is terrible.  I've always tended to internalize stuff and this is just eating me up emotionally.  I had not considered that as a potential cause and my Dr hasn't brought that up either. 

[ianmx]

doctors will not usually connect a physical illness to mental, they are trained to look at only the physical for their solutions. i would do two things. find a therapist and start an antidepressant, they are not just for depression. antidepressants also help with other things like anxiety. i would guess that would be more useful than art at this point.

when you start art will be between you and your doctor, but depending on how you plan on paying for your meds, start a little early but don't take the meds yet. hoarding is a good idea, get a three month supply then start taking after that. this is in case you have an insurance lapse, so you are in a good place now for that, but i bet you could wait one or more years to start art depending on your lifestyle. of course hiv (like everything) is different to each person's body. keep getting blood tests every 3 months and make the call a little early to get meds so you can stockpile emergency meds.

ian

[tednlou2]

Chris, welcome to the forums.  Of course, I'm sorry you tested positive.  First, your body has done a great job getting the viral load down-- assuming you were like most and had a viral load in the hundreds of thousands or millions, after infection.

Like you, I was pretty sure I was infected.  I developed an awful mono-like illness and those awful, sore lymph nodes.  Besides having no energy, they were soooo sore.  Mine were worse around my shoulders.  I used a heating pad, which helped some.  And, meds like Tylenol.  Mine stayed sore for several months.  The pain finally went away, but the swollen nodes remained. 

After all these years, I still forget things I've learned about lymph nodes and HIV.  Not everyone gets them swollen and painful.  I've read different things-- swollen and painful means your immune system is fighting the virus better, than those who don't get them.  I read that a long time ago and not sure what studies have actually been done on that.  Although, it may be no coincidence you have painful nodes, while getting your vl to a low number and CD4 to a high number. 

Basically, they should be expected to stop being painful, even without starting meds.  But, starting meds should definitely help speed up the process.  Don't mess with the lymph nodes, as touching them aggravates them.  I know I would feel them constantly, in the beginning.  The heating pad is the only thing I can think of, that helped mine. 

Keep in touch,

Ted   

[ChrisnTX]

Ted,  Thanks for the reply.  What you've outlined is very consistent with what I am experiencing.  When I converted I got the mono/flu like illness and it was pretty intense.  Literally went down the list of most common symptoms and I had every one at some point so I knew what was going on (BTW in hindsight should have just gotten tested and saved myself a lot of anxiety.) 

The lymph nodes started to be a problem towards the end of the conversion process.  I'll definitely try a heating pad and see if that helps. OTC pain relievers help too. It does seem to be getting a little better on its own over time too.   

Some of it may be stress too.  I've noticed that I have a lot of aches and pains when Im get worried about something, and I worry about everything these days, but that goes away if I stop thinking about whatever it is or get occupied with other activities.   

Thanks again for the reply.

Chris

[shaunsag]

First off, great forum and lots of fantastic information.  It's been a very rough time for me and the information here has really helped. 

I was infected in early April and tested positive early July. I delayed getting tested but knew I had been infected.  About five weeks after I got it my lymph nodes blew up and are painful. It's not constant they go down and come back but the pain is constant.  It's not horrible but achy with bouts of sharper pain.  Its also all over, backs of knees, groin, arm pits, elbows, along my clavicles and around my jaw and neck. 

I got my initial labs back three weeks ago, CD4 1013 and VL 360, and there is nothing else going on outside of HIV. My Dr left it up to me to start ART or not and together we decided that I'm going to start Stribild which I got last week and am starting this coming weekend.  His thoughts on the pain are that my body is reacting strongly to the virus and it's not a bad thing but at the same time he is unwilling to prescribe anything.

Long story short, my question for y'all is has anyone else experienced this and what helped? Also will starting ART relieve it?

Thanks

Your numbers are very good to what have read on here with some others. so it is a good thing that you got  tested early everything will be okay just hang in there and take a deep breath we are all here if you need anything

[ChrisnTX]

Thanks, shaunsag, appreciate the support. I do remind myself that while its a bad deal in many ways Im lucky and it could be much worse.  I'm fortunate in having a great support network, a fantastic doctor and outstanding initial labs. 

The aches and pains are no more than annoying and Im relieved in knowing that its likely not something permanent. 

[Tonny2]

         ojo       Hello Chris....welcome....as soon as you start your meds, you will get a peace of mind because you will know that you are doing something about it...good thing you got it early, now is time to fight it...I wish I had your numbers...good luck, hang in there,, you have gotten good advices from all previous member,  I have no more to say...hugs                 ojo

[mecch]

ChrisnTX - sorry you got HIV.  Glad you already have access to treatment. Start your treatment and the other stuff will resolve eventually.  Far as I know, there is no special drug for your nodes - the HIV drug is the appropriate medicine.  Knock down the HIV.

[ChrisnTX]

Thanks for the welcome Tonny2 and mecch.  Just a quick update started Stribild last week, no side effects to speak of and but I felt better within a few days of starting it.  I think now that Im doing something about the HIV its helped my attitude tremendously. 

[Tonny2]

Thanks for the welcome Tonny2 and mecch.  Just a quick update started Stribild last week, no side effects to speak of and but I felt better within a few days of starting it.  I think now that Im doing something about the HIV its helped my attitude tremendously.

          ojo    Hi Chris, I/m glad you are feeling better...keep up the good attitude and you will be fine and will live a long and happy life, take it from me, a good attitude, no playing the victim card, but looking always forward because of my loveones, but especially for myself...it's been almost 21 years since I started treatment, and since then, I got the be in my nieces high school graduation (now she wants to see me on her wedding day), I just came back from the old country, from meeting my secon grand biece, OMG, I'm getting old, lol...so. keep up the good attitude and there will be a bright future for you too...good luck snd keep us posted...hugs                     ojo

[mecch]

Thats right you have done your bit.

I felt better the day after my first dose. My body was completely exhausted and in battle with the HIV.  The drug LOCKS down the replication by several folds ever cycle.  I felt that, as I had been living for 3 months with VLs in the millions.... I felt relief in my system.