OMG!!! Ear piercing = MAJOR relapse???

[Boule de feu]

sounds like you'd best take it out of your ear if you havent already done so... if its the cause of your worsening state and you allow it to continue..worsening ME/CFS can be very hard to fix

ME is easy to see if one is worsening or not if one keeps good records for a while of activity levels, amount of symptoms you have and also rate each symptom (I rate mine out of 10).

I cant thou see how a doctor can tell if someone if worsening or not unless you have obvious symptoms showing.

I just remembered that my legs gave out on me (with a lot of pain) a little while after the piercing. I had walked too far and my daughter had to push me out (sitting on my walker) of the building. It is a very big shopping mall and I wanted to purchase some birthday cards for my son's birthday. We also went for an ice cream (i try to stay away from lactose but it was Laura Secord's!!!). It was a very special day for us. Just that in itself could have triggered a relapse: If I venture out for more than 40 minutes, I am sick for 3-4 days after the event. This time around, I really pushed my envelope. It was a silly move from my part.

At some point, my GP said that my condition seemed to be going progressively worse and that some patients were getting better after a while but not me.

I will force myself to rest a 100% for the next few days and see how it goes. I see my GP on Thursday.

 

[taniaaust1]

I had walked too far and my daughter had to push me out (sitting on my walker) of the building. It is a very big shopping mall and I wanted to purchase some birthday cards for my son's birthday. We also went for an ice cream (i try to stay away from lactose but it was Laura Secord's!!!). It was a very special day for us. Just that in itself could have triggered a relapse. If I venture out for more than 40 minutes, I am sick for 3-4 days after the event. This time around, I really pushed my envelope. It was a silly move from my part.

yeah that sounds enough to be very possibly the issue. Take care.. I hope a few days rest helps (you may need more thou if you pushed yourself very hard).

If you have tendancies to push yourself past your limits.. think about getting one of those heart rate monitors with alarm which are being recommended for ME. (the new international guidelines do mention them for that reason).

 

[maddietod]

Same here. Do you get the blackening as well around your piercing?

Yes, and the earring post turns black if I leave it in. I don't wear any jewelry now.

 

[Hip]

There was a documentary on TV I saw a few weeks ago where a girl had got a tongue piercing while on holiday in Paris.

A year or so later she had severe headaches, and other symptoms. To cut a long TV medical story short, doctors eventually found a bacterial abscess in her brain, from a common bacterium that is normally found in the mouth. The doctors reckoned it was the tongue piercing that allow the bacteria to enter the blood, and travel to the brain.

Of course this is extremely rare, and not something likely to happen to anyone normally. Millions of people get piecings without any problem.

But it might be worth considering that some bacteria may got into your blood stream, making you feel tired while the body fights it off. I hope this helps.

 

[SOC]

You probably explained somewhere what you did to get better. Would you mind sharing your treatment with me?

For me, the biggest thing was probably suppressing the 5 known chronic infections I had (my GP wouldn't have noticed or treated them ).

1. Pacing w/HR monitor (really helps to limit PEM/PENE)
2. Trazodone + Tylenol PM (6 years -- for sleep. This was a big help)
3. Cymbalta (6 years -- for pain. Mine is not severe)
4. Pall Protocol (worked for me for MCS-type symptoms, maybe methylation)
5. Valcyte (2 years)
6. Valtrex (1 year and ongoing)
7. Equilibrant (6 months and ongoing)
8. Armour Thyroid (for hypothyroid)
9. Verapamil (for tachycardia -- 6 months and ongoing)
10. Electrolytes and fluid loading (6 months and ongoing, helps with tachycardia -- low blood volume?)
11. Provera (progesterone for endometrial hyperplasia -- probably unrelated, but I listed just in case )
12. Zyrtec (twice daily)

Plus supplements

1. Multivitamin high in B vitamins
2. CoQ-10
3. Omega-3
4. Vit C
5. NAC
6. Jarrow CarnitAll (mix of carnitines)

I've tried other supplements, but these seem to work the best consistently for me.

I know, it's a lot of stuff. As I said, the biggest were the meds/supplements that dealt with viruses -- Valcyte, Valtrex, Equilibrant. The next big thing was probably dealing with OI -- Verapamil, electrolytes, and fluid loading.

Getting sleep was a huge thing for me, but I don't know what the effect was on the overall illness.

 

[Boule de feu]

There was a documentary on TV I saw a few weeks ago where a girl had got a tongue piercing while on holiday in Paris.

A year or so later she had severe headaches, and other symptoms. To cut a long TV medical story short, doctors eventually found a bacterial abscess in her brain, from a common bacterium that is normally found in the mouth. The doctors reckoned it was the tongue piercing that allow the bacteria to enter the blood, and travel to the brain.

Of course this is extremely rare, and not something likely to happen to anyone normally. Millions of people get piecings without any problem.

But it might be worth considering that some bacteria may got into your blood stream, making you feel tired while the body fights it off. I hope this helps.

I have read so many stories like this one that I got very scared at some point and I think I got my very first... Panic Attack!!! Fortunately for me, I was able to use a bit of the relaxation tricks I got during my CBT sessions. At least, it worked and I was back to my normal self after that (normal self is too much of a big word for me - LOL).

I'm wondering how they were able to prove without a shred of a doubt that the piercing was the culprit?

 

[Boule de feu]

For me, the biggest thing was probably suppressing the 5 known chronic infections I had (my GP wouldn't have noticed or treated them ).

1. Pacing w/HR monitor (really helps to limit PEM/PENE)
2. Trazodone + Tylenol PM (6 years -- for sleep. This was a big help)
3. Cymbalta (6 years -- for pain. Mine is not severe)
4. Pall Protocol (worked for me for MCS-type symptoms, maybe methylation)
5. Valcyte (2 years)
6. Valtrex (1 year and ongoing)
7. Equilibrant (6 months and ongoing)
8. Armour Thyroid (for hypothyroid)
9. Verapamil (for tachycardia -- 6 months and ongoing)
10. Electrolytes and fluid loading (6 months and ongoing, helps with tachycardia -- low blood volume?)
11. Provera (progesterone for endometrial hyperplasia -- probably unrelated, but I listed just in case )
12. Zyrtec (twice daily)

Plus supplements

1. Multivitamin high in B vitamins
2. CoQ-10
3. Omega-3
4. Vit C
5. NAC
6. Jarrow CarnitAll (mix of carnitines)

I've tried other supplements, but these seem to work the best consistently for me.

I know, it's a lot of stuff. As I said, the biggest were the meds/supplements that dealt with viruses -- Valcyte, Valtrex, Equilibrant. The next big thing was probably dealing with OI -- Verapamil, electrolytes, and fluid loading.

Getting sleep was a huge thing for me, but I don't know what the effect was on the overall illness.

This is very interesting. Thank you.

I have tried many AD (cymbalta, zoloft, amitriptyline, wellbutrin, to name a few) over the years but at some point my GP gave up on them. I was having too many side effects even at very low dose for pain.

I wish I could sleep more. Some nights are very bad and no matter how good they are I wake up feeling awful the next day. I'm dead exhausted around 10:30 PM but do wake up around 2:30 - 3:00 AM each night with extreme nausea or pain. Most of the time, I manage to go back to sleep around 5:30 but I choose to get up around 6:45 to be with my children before they leave for school. By 10:30 AM my symptoms are very bad and I must lie down to make them go away. If I manage to have a good night sleep (6 hours), I get up at 5:30 AM anyway. Can't sleep past that. By 11:00 AM, I am feeling too awful to keep going. So, either way I never feel good after 11:00 AM. I feel a bit better around 4:00 PM (this is if I have been resting most of the afternoon). If I feel good enough, I will take a shower or prepare supper but by 5:30 it's bed time again. If I do anything else, I always end up spending more energy than I have. It is frustrating. If I feel that I have a bit more energy than usual, I will venture out (thinking i'm okay) and I end up being more ill. Sometimes, a 5 minute-walk can put me back in bed for 4 hours. It's never the same.

I am taking Neurontin (vertigo and erythromelalgia), Omega-3, vitamins D and B, fiorinal (for extreme headaches and nausea).
When my problems become too difficult to handle, I also have domperidone and ketorolac.

I would love to learn more about the HR monitor but I wonder if I would do less with that (with a monitor, I might end up in bed more and not have a life at all - at least now, I try to do things).

I do have severe menstrual and ovulation problems as well (adenomyosis with pain).
I have severe post-nasal drip, chronic throat inflammation and ear infections (since November 2005) - I just started a cortisone-like nasal spray (can't remember the name).

My GP would never prescribe something like Valcyte or Valtrex. We talked about it and he said no. :-(
I don't know what it would take to convince him. Each time I go see him, I get very depressed. I get back home and I see that i'm still at square one. Nothing is being done to make me feel better. He tells me that we are out of options (I know it's not true). Last time, I was crying and begging to find something that would work for me. I was complaining that my dad needed me to be with him (Last stage - cancer- a few months left) and I could not be with him. It is sad to say but I am more ill than my dad is at the moment and I am not even dying.

 

[SOC]

This is very interesting. Thank you.

I have tried many AD (cymbalta, zoloft, amitriptyline, wellbutrin, to name a few) over the years but at some point my GP gave up on them. I was having too many side effects even at very low dose for pain.

That's too bad, but not unusual with ME/CFS. I'm fortunate that my pain was moderate enough that Cymbalta plus OTC pain meds could handle it.

I wish I could sleep more. Some nights are very bad and no matter how good they are I wake up feeling awful the next day. I'm dead exhausted around 10:30 PM but do wake up around 2:30 - 3:00 AM each with extreme nausea or pain.

I am prescribed Trazodone for sleep maintenance. It sounds like you might have a maintenance problem, too. FWIW, Trazodone is a different class of AD than the ones you mentioned, so it might work for sleep where others didn't. No guarantees, though. We PWME are so sensitive to meds in different ways.

Have you been checked for Meniere's Disease? It can cause vertigo and nausea. Meniere's Disease can be the result of EBV infection, which is pretty common with ME/CFS. That might be a backdoor way into getting some antivirals.

You might also try some electrolyte drink before bed just in case you are getting very low BP or low blood volume overnight.

I would love to learn more about the HR monitor but I wonder if I would do less with that (with a monitor, I might end up in bed more and not have a life at all - at least now, I try to do things).

Well, yeah, that's kinda the point. If you're overdoing, you are probably just making yourself worse and worse, AND your GP isn't going to understand that you are truly very ill.

I have severe post-nasal drip, chronic throat inflammation and ear infections (since November 2005) - I just started a cortisone-like nasal spray (can't remember the name).

Been there, done that. It didn't get any better until I got the herpesviruses under control. Your situation may be different, of course.

My GP would never prescribe something like Valcyte or Valtrex. We talked about it and he said no. :-(
I don't know what it would take to convince him. Each time I go see him, I get very depressed. I get back home and I see that i'm still at square one. Nothing is being done to make me feel better. He tells me that we are out of options (I know it's not true). Last time, I was crying and begging to find something that would work for me. I was complaining that my dad needed me to be with him (Last stage - cancer- a few months left) and I could not be with him. It is sad to say but I am more ill than my dad is at the moment and I am not even dying.

My GP was/is the same way. It wasn't until he actually did harm to my daughter through his ignorance and misplaced self-assurance that I finally got us to see a good specialist. I should have done it sooner; I am confident that I would be healthier now.

Don't let the GP discourage you. It's his ignorance, not the reality of the situation that has you "out of options". Maybe he'll get some better ideas if you take him the new ICC-based Primer. Or maybe it's time to get yourself to an ME/CFS specialist.

Best of luck!

 

[Wayne]

Is it possible that I am reacting to having one ear pierced?
I am so sick now. It feels like I have been poisoned. :-(
Have you had a similar experience?

Hi Boule de feu, so sorry to hear about your relapse. I doubt this is applicable to your situation, but thought I'd just mention that I get very depleted from any kind of skin puncture, almost like a balloon being popped. This can be from a very small nick from shaving, a small accident with a knife, a blood draw, etc. When it happens, I usually lay down right away and try to get extra rest. -- I hope you can get this figured out for yourself. It's amazing how the seemingly most innocuous things can throw pwCFS for a loop.

Wayne

 

[Hip]

I have read so many stories like this one that I got very scared at some point and I think I got my very first... Panic Attack!!! Fortunately for me, I was able to use a bit of the relaxation tricks I got during my CBT sessions. At least, it worked and I was back to my normal self after that (normal self is too much of a big word for me - LOL).

I'm wondering how they were able to prove without a shred of a doubt that the piercing was the culprit?

I don't think it they considered it proved beyond all doubt, but the doctors considered it a likely explanation, given that the bacterium they found in the brain is normally only present in the mouth, and it was a tongue piercing, made a few months before the first symptoms appeared. But these sort of things are never known for certain.

Given the rarity of this sort of thing, though, I would not think it is likely in your case. I certainly would not like to see you have a panic attack over this suggestion! There is probably a completely different explanation. Or just pure coincidence.

However, it might be worth trying perhaps some natural antibiotics for a few weeks, like say oregano oil capsules.

 

[Hip]

This page on surgical steel allergy is interesting. Apparently nickel is one of the component metals in surgical steel (along with chromium and/or molybdenum). Presumably the nickel content is enough to provoke an allergy.

Surgical steel contains approximately 18 percent chromium and 8 percent nickel (see here).

So it may just be that you had an allergic reaction to surgical steel.

 

[taniaaust1]

I hope you dont mind the comment Im about to do but from your description of things.. you havent got your pacing right yet and are needing to improve it which should help make things better for you some (esp after a while). Getting pacing right is probably the most important thing when it comes to this illness and the first step of hopefully helping it. After that.. trying to treat everything follows.

What I can see that you arent doing..(hard to explain but I'll try) is that you arent like getting ahead of the illness (preemptive resting) rather you are leaving it so the illness is in control and forcing you to change what you are doing eg.. you are doing things till you are crashing. (but by this time.. the illness is really giving you a hard knock about which isnt good at all). You are leaving your body with no spare energy at all for it to put into healing and actually from what I can see there at risk of making your condition worst due to the amount of strain as you are pushing yourself quite a bit there when you should be resting.

Any progress your doctor helps with (IF he was helping you right now) may end up being lost due to how much you are pushing.. you'd probably just use any extra ability to do things to just do more and still be pushing yourself to your max limits still just like you are now and crashing and feeling crappier still. (Im saying this cause this is the pattern you are currently in). If you get your pacing a bit more under control at least then when you do find a doctor to help you start to make progress.. you'll be pacing better and more likely then to have better improvements with treatments then you do now with the pressure you are putting onto your current already unhealthy body.

You may able to pace better (so not to push till start crashing) without further restricting your activities much. I'll give an example.

Most of the time, I manage to go back to sleep around 5:30 but I choose to get up around 6:45 to be with my children before they leave for school. By 10:30 AM my symptoms are very bad and I must lie down to make them go away.

By 11:00 AM, I am feeling too awful to keep going. So, either way I never feel good after 11:00 AM. I feel a bit better around 4:00 PM (this is if I have been resting most of the afternoon).

That is suggesting to me for good pacing that you should be .. laying down resting well before 10.30am (your body is saying that you doing activities from 6.45 am -10.30am is far too long. (you need to work out your optimin time you can usuallly do things for BEFORE starting to make your condition worst).

For the first change in your routine I see you need to make, I personally would suggest to lay down and rest maybe even right after you've got your children sorted out and off to school.. bring your rest time forward.. By doing this.. you should RECOVER FASTER then if you kept going till 10.30am at which time you are quite bad so by then probably needing a much longer recovery time. (by breaking your activity times down more.. it may have the effect of less rest up needed or possibly the same amount of rest but with far less symptom worsening coming in). So Im suggesting here to go laying down right after getting kids off to school and making yourself lay down till 10.30am to give your body time to rest from the early morning activity.

... Smaller time lengths of activity time are needed which will probably lead to more but not as long rest times. (note .. I arent saying less activity.. Im just suggesting to try doing things a bit differently to put less strain on your body.. some may find they dont need to cut back on activity at all and may find just doing things a bit differently.. learning just to listen to ones body and what it is needing to do at certain times.. can help.. you currently do not know when you should be stopping.. yes a heart monitor in your case may prove to be helpful to you to make you listen to your body better.. but just by going by ones own symptoms and when they start to come in one can tell its time to rest).

Id be still be bedridden if I hadnt learnt to pace well.

Feel free to completely ignore my post if you wish too.

 

[Boule de feu]

FYI -

I am sorry I left this discussion. A few weeks ago, my dad passed away. I had to take care of him at his home. Since I was not feeling very well, I was sleeping most of the time besides him. Well, at least, he was not alone. After his passing, I forced myself to stay in bed, so I would avoid a major relapse. I feel a bit better, now. But, I am very careful to stay within my energy envelope.

 

[Boule de feu]

That's too bad, but not unusual with ME/CFS. I'm fortunate that my pain was moderate enough that Cymbalta plus OTC pain meds could handle it.

I am prescribed Trazodone for sleep maintenance. It sounds like you might have a maintenance problem, too. FWIW, Trazodone is a different class of AD than the ones you mentioned, so it might work for sleep where others didn't. No guarantees, though. We PWME are so sensitive to meds in different ways.

Have you been checked for Meniere's Disease? It can cause vertigo and nausea. Meniere's Disease can be the result of EBV infection, which is pretty common with ME/CFS. That might be a backdoor way into getting some antivirals.

You might also try some electrolyte drink before bed just in case you are getting very low BP or low blood volume overnight.

Well, yeah, that's kinda the point. If you're overdoing, you are probably just making yourself worse and worse, AND your GP isn't going to understand that you are truly very ill.


Been there, done that. It didn't get any better until I got the herpesviruses under control. Your situation may be different, of course.

My GP was/is the same way. It wasn't until he actually did harm to my daughter through his ignorance and misplaced self-assurance that I finally got us to see a good specialist. I should have done it sooner; I am confident that I would be healthier now.

Don't let the GP discourage you. It's his ignorance, not the reality of the situation that has you "out of options". Maybe he'll get some better ideas if you take him the new ICC-based Primer. Or maybe it's time to get yourself to an ME/CFS specialist.

Best of luck!

I am sleeping a lot, lately. I guess I have a lot of catching to do. So, I don't need medication for this... at least, for the time being.

I don't know what the tests are for Menière's. However, I remember that my GP mentioned it at some point. I'm sure he ruled it out.

I'm so sorry for what happened to your daughter.

You are right. It's mostly because my GP does not know what is going on with me that I am out of options. I have tried to approach him with ideas, but he is very reluctant to try anything that is not "in the book".

 

[Boule de feu]

Hi Boule de feu, so sorry to hear about your relapse. I doubt this is applicable to your situation, but thought I'd just mention that I get very depleted from any kind of skin puncture, almost like a balloon being popped. This can be from a very small nick from shaving, a small accident with a knife, a blood draw, etc. When it happens, I usually lay down right away and try to get extra rest. -- I hope you can get this figured out for yourself. It's amazing how the seemingly most innocuous things can throw pwCFS for a loop.

Wayne

Yes. Same here. Thank you for sharing this with me. I am not the only alien on this planet! LOL

 

[Boule de feu]

This page on surgical steel allergy is interesting. Apparently nickel is one of the component metals in surgical steel (along with chromium and/or molybdenum). Presumably the nickel content is enough to provoke an allergy.

Surgical steel contains approximately 18 percent chromium and 8 percent nickel (see here).

So it may just be that you had an allergic reaction to surgical steel.

If it is a nickel allergy, I guess my body would react days, weeks, months later... as long as the jewelry is in my ear? It seems to be better. It has healed, I think. I feel better, too. My daughter is still having problems with hers (bleeding, crust, etc.).

 

[Boule de feu]

I hope you dont mind the comment Im about to do but from your description of things.. you havent got your pacing right yet and are needing to improve it which should help make things better for you some (esp after a while). Getting pacing right is probably the most important thing when it comes to this illness and the first step of hopefully helping it. After that.. trying to treat everything follows.

What I can see that you arent doing..(hard to explain but I'll try) is that you arent like getting ahead of the illness (preemptive resting) rather you are leaving it so the illness is in control and forcing you to change what you are doing eg.. you are doing things till you are crashing. (but by this time.. the illness is really giving you a hard knock about which isnt good at all). You are leaving your body with no spare energy at all for it to put into healing and actually from what I can see there at risk of making your condition worst due to the amount of strain as you are pushing yourself quite a bit there when you should be resting.

Any progress your doctor helps with (IF he was helping you right now) may end up being lost due to how much you are pushing.. you'd probably just use any extra ability to do things to just do more and still be pushing yourself to your max limits still just like you are now and crashing and feeling crappier still. (Im saying this cause this is the pattern you are currently in). If you get your pacing a bit more under control at least then when you do find a doctor to help you start to make progress.. you'll be pacing better and more likely then to have better improvements with treatments then you do now with the pressure you are putting onto your current already unhealthy body.

You may able to pace better (so not to push till start crashing) without further restricting your activities much. I'll give an example.




That is suggesting to me for good pacing that you should be .. laying down resting well before 10.30am (your body is saying that you doing activities from 6.45 am -10.30am is far too long. (you need to work out your optimin time you can usuallly do things for BEFORE starting to make your condition worst).

For the first change in your routine I see you need to make, I personally would suggest to lay down and rest maybe even right after you've got your children sorted out and off to school.. bring your rest time forward.. By doing this.. you should RECOVER FASTER then if you kept going till 10.30am at which time you are quite bad so by then probably needing a much longer recovery time. (by breaking your activity times down more.. it may have the effect of less rest up needed or possibly the same amount of rest but with far less symptom worsening coming in). So Im suggesting here to go laying down right after getting kids off to school and making yourself lay down till 10.30am to give your body time to rest from the early morning activity.

... Smaller time lengths of activity time are needed which will probably lead to more but not as long rest times. (note .. I arent saying less activity.. Im just suggesting to try doing things a bit differently to put less strain on your body.. some may find they dont need to cut back on activity at all and may find just doing things a bit differently.. learning just to listen to ones body and what it is needing to do at certain times.. can help.. you currently do not know when you should be stopping.. yes a heart monitor in your case may prove to be helpful to you to make you listen to your body better.. but just by going by ones own symptoms and when they start to come in one can tell its time to rest).

Id be still be bedridden if I hadnt learnt to pace well.

Feel free to completely ignore my post if you wish too.

I would like to get my pacing right. There is no way I could go from 6:30 to 10:30 without resting. Actually, I do a lot of it. Let's say I want to empty the dishwasher, I will do the first tray and then go back to my sofa. I get dizzy and can't keep going. After 20 minutes, if I feel better, I will come back to it or leave it for the next morning. Same with everything else. I have no choice, otherwise I feel like I'm going to throw up or the migraine becomes unbearable.

After my dad's funerals, I forced myself to spend 10 days in bed. I started to feel better on the 7th day. That day, I did a light activity. I was fine until the next day. Then, total crash. Yesterday, I was still sick but a bit better. Today, I am feeling well enough to be here (sitting at the table), but I feel I am pushing more than I should (dizziness, nausea, migraine, etc.). If I want to keep going, I must rest my head. So, I will have to go back to my sofa. I feel like It does not matter if I'm pacing right or not. I get sick anyway as soon as I do something with my head up.