relapse or something else?

[Ambrosia_angel]

How do I know the difference between a relapse and something else? I've been ill with ME for a year and have been feeling really ill recently the symptoms are a lot worse and the pain is slightly different since when I was first ill. The tiredness is a lot worse and seems to come in waves.

i am going to the gp on Monday but to be honest I know he can't do anything except send me for a blood test. So I've been quite reluctant because if it is a relapse the results will come back as normal anyway.

I'm 16 btw.

 

[Ambrosia_angel]

I'm just wondering what the people who have had ME for years method is when figuring out if you have something else more serious or a really bad relapse.

 

[Seven7]

I think if you go down on your ability to function and lasts longer than a few weeks is a relapse. No matter what is taxing your immune system, if you feel the basic symptoms and new ones. At least is how I see it.

Example I had Parvo, coasxie and HH6V, I felt so horrible, with treatment I got better, then I got EBV. My symptomology was different than with the first reactivation. So I think a lot of the symptoms are basic to ME, but the rest is related to the type of reactivation we get, or any other down fall of having ME (OI, lungs, heart, neuro complications......).

 

[Ambrosia_angel]

Hi thank u for replying. So do you think that I could have a reactivation of some sort?

My mum thinks that I could have a virus but I really want to avoid antibiotics due to personal side efffects.

I've only been really ill this past few days or so. To the point that when the waves come on I can barely keep my eyes open and head up. But I've been feeling unwell for the past week.

 

[Ambrosia_angel]

Bump. Please need help.

 

[SOC]

Hi thank u for replying. So do you think that I could have a reactivation of some sort?

My mum thinks that I could have a virus but I really want to avoid antibiotics due to personal side efffects.

I've only been really ill this past few days or so. To the point that when the waves come on I can barely keep my eyes open and head up. But I've been feeling unwell for the past week.

You certainly could have a viral reactivation, but you could also be having an exercise-induced relapse... or both. There's really no way to tell from what you have told us. It's not that easy to tell even with lots of information. ME relapses can arise from excess activity, common infections, and in some people emotional stress.

The good (?) news is that if you have a viral infection, you don't have to worry about taking antibiotics. Antibiotics (as the term is generally used) are for bacterial, not viral infections. It's unlikely a doctor will give you any medication for a viral infection.

Your best bet is to rest as much as possible and drink lots of fluids -- what you should normally do for a viral infection only more so. With luck it's just a cold or flu and will pass as they normally do.

 

[Kati]

Hi Ambrosia_angel, first, it's great (and sad) to see young people out here. Know that you are in my thoughts.

When I got sick from the initial EBV infection (mono) it took a while for my symptoms to 'stabilize'. For one it became much worse following a difficult gallbladder surgery 4-5 months following initial illness and the relapse happened 3weeks after the surgery and I couldn't make sense of the symptoms ( which I understood later on was orthostatic intolerance)

I think it's a good thing you will see the doctor. But here are some suggestions:
-keep a daily journal of your symptoms and activities
When I kept one, in the first couple of years, I kept it in bed so I wouldn't forget to write daily.
It could help you putting a name to the yukky feeling. Is it cognitive? Pain? Sore throat? Dizziness when upright?
You can share this with your physician to add in your file as well, if you want to.

-you may indeed have a relapse or a viral illness, in which case rest is essential, REST! And if you feel a bit better, rest more.

It can be ery frustrating to not be able to make sense of your symptoms and to not have control oer them. In time though, you will learn how to manage and how to pace.

Know that you are not alone, and that in fact you are in very good company of other patients with the same illness, pushing hard for our governments and charities to fund decent research for patients with ME.

 

[Seven7]

Also, this is very important, track your blood pressure and Heart rate, that will tell you A LOT. I bought one easy bp cuff for like $40 in pharmacy and it had heart rate reading.

Measure when you first wake up and before going to bed. Measure when you are feeling bad. And read about the poor man tilt table test and try that. That is the things that are most useful that we can track with CFS.

Post results pls.

 

[Ambrosia_angel]

SOC I always thought that they didn't use antibiotics for viral infections but I have heard of it being used but the dr would just be doing guess work because he wouldn't have any bloods at the time of the appointment. They need to test my vitamin d because it was low anyway so he will probably do other stuff like fbc and iron etc.

Kati I did keep a diary. My mum said it could be. Because I've been eating a lot more white bread recently but I have no gluten intolerance. I'm pretty sure they tested it at least twice now.

My symptoms have been really severe tiredness. Like when it comes on I can't keep my head up even though I'm not "sleepy" if that makes sense. Bone pain like before but more individually located and more likely to be triggered by movement. Chest palpitations that happen a lot more often. Like several times a day.

Also I have a really odd bruise on my leg which I've had for a week. It was really painful but that has eased. The discolouration was quite greenly/blue for the first few days and I had no trauma. It's really unusual as I have dark skin and never have I experienced a bruise like that before even with trauma. Luckily I haven't had anymore painful unexplained bruising but I can't always tell as my skin is dark.

@inester7 thank you for that advice. I will seriously consider that. I also need a new thermometer because I'm sure I've had fevers at times and not known.

Sorry if I made any typos. Thank you for the replies I really appreciate it.

 

[peggy-sue]

It could be for all sorts of reasons - perhaps you felt a bit better with the good weather and did slightly too much on a daily basis?
That can send you into payback as much as one big bout of overdoings.

Perhaps it's that it is getting colder and darker now, you are feeling worse?
ME symptoms interact a lot with the temperature, and particularly with humidity.


Can I offer a couple of bits of good practical advice to save and conserve your energy?

Never stand when you can sit, but if you have to stand, shuffle around a bit.

This means you are not putting a huge strain on loads of your muscles the whole time, you are shifting between muscle groups
- because standing still requires about 360 odd muscles all tight and pulling against each other - it is not passive!

Also, there is something in your legs called "the muscular pump".
This works when you are moving your legs.
The physical expanding and contracting of the muscles surrounding the blood vessels squeezes the blood in the vsessels up . It gets held up by valves in the blood vessels.
This helps your heart move the blood which has arrived at your feet back up again.

Moving the blood in your feet back up into the body is about the hardest thing your heart has to do.

So if you are shuffling around, you are helping your heart and saving yourself from muscular overdoings.



When you are sitting, keep your feet raised up on a footstool.
Again, this helps your heart, because the muscular pump isn't in operation. Keeping your feet level with the rest of your body reduces the fight against gravity your heart has to achieve if your feet are on the ground.

And never sit when you can lie down.

Get all that sorted and you really will save your body a lot of energy, you can put to much better use.

Another thing which helps a lot, (not that I do it daily any more) is having a small seat to use when I'm showering.

I can even wash my own hair, sitting on my little stool, propping my elbows on my knees, and dropping my head to my hands.
This means I don't have to spend long with my arms in the air, and my legs don't "go" from too much standing.

 

[Ambrosia_angel]

I've been to the gp and the Dr ordered a bone profile, thyroid function an vitamin d test.

My Dr and everyone keeps saying I need to walk and do everything and exercise more. They keep saying that they don't want me to go in a wheelchair but it's hard to keep on standing and walking when I'm tired and in a lot of pain. Even my OT that specializes in CFS says it's just tiredness. Tbh I just don't know what to do anymore. I feel like seriously giving up.

 

[peggy-sue]

eeeeeeeek!
at this;
"My Dr and everyone keeps saying I need to walk and do everything and exercise more. They keep saying that they don't want me to go in a wheelchair but it's hard to keep on standing and walking when I'm tired and in a lot of pain. Even my OT that specializes in CFS says it's just tiredness."

If you suffer from ME, (and that is a big if, nobody gets a proper diagnosis in the UK, and "CFS" isn't a diagnosis of anything) do you get what we call PEM (= post exertional malaise)? (or PENE = post-exertional neuroimmune exhaustion, or payback...)

That's the "excessive exhaustion with exacerbation of all other symptoms too" bit that comes at least a day later (when you've not been ill for long) after you've done too much.

If you get that, do not, under any circumstances, let anybody push you into doing anything that will provoke it.

The longer you spend in that state, the less likely any good recovery.

You are very young, you've had an early diagnosis. Those are the two best things that could have happened to you if you must get ME, because YOU have a better chance of full recovery.

So-called CFS and ME "specialists" are wrong. They believe there is absolutely nothing physically wrong with us, which is why they suggest exercise to "get fitter".

They do not believe in all the real biomedical research which as shown serious abnormalities in muscle functioning etc.etc. They deny it even exists.

There is a perfectly true story of a young boy with ME, who had been put in hospital because of his "false illness beliefs".

They threw him into a swimming pool, to try to force him to prove he really could move, to save himself.
Of course, he couldn't and had to be rescued.

Another sufferer was left in her bed, but the food taken to her was left on the other side of the room, to try to force her to move from hunger. Of course, she went hungry.

"CFS/ME" is not an area which has any proper specialists in the UK at all.
The "treatment" centres all think we are just imagining it, and malingering - no matter how nicely they dress it up,

or try to pretend they think it is not "psychological" because depression has an organic cause in the brain,

then go on to make it all purely psychological conjecture.

Your OT does not feel the pain you feel, or feel the utter exhaustion you do, when they cheerily tell you; "it's just tiredness".

If they could feel what you feel, they wouldn't be telling you that either.

BUT if you don't get payback, PEM, PENE, then give the exercise a go.

 

[Valentijn]

My Dr and everyone keeps saying I need to walk and do everything and exercise more. They keep saying that they don't want me to go in a wheelchair but it's hard to keep on standing and walking when I'm tired and in a lot of pain. Even my OT that specializes in CFS says it's just tiredness. Tbh I just don't know what to do anymore. I feel like seriously giving up.

Your doctor and "everyone" is dead wrong. Pushing yourself will just cause you to deteriorate even faster.

There are usually two primary factors causing disability (often called "fatigue") in ME/CFS. The first one is post-exertional malaise, which is when we get very sick after exertion. It doesn't even have to be exercise, as even basic everyday activities can have a huge impact. The only way to avoid this is with careful pacing. Pacing means that you consistently cut your activities back to a level where you don't have symptoms worsening.

The other disabling aspect of ME/CFS is autonomic dysfunction. Doctors can test for it and treat it. Basically it involves blood pressure and/or heart rate doing bad things when you're standing or sitting up for too long. A blood pressure monitor might show you blood pressure or pulse pressure getting low after a while. A heart rate monitor (or pulse oximeter) might show your heart rate getting very elevated just from standing up, or getting too high and staying too high after very minor exertion.

There is a lot of research indicating that ME/CFS patients have very abnormal PEM and autonomic responses to exertion, which are not even remotely explained by "deconditioning". I'm sorry that your doctor has not read any of it. Patient surveys also show that most ME/CFS patients found increased activity programs (GET) to be harmful. Some report long term or permanent worsening of their condition, including becoming bedbound for years.

There is also no evidence at all showing that GET is helpful in reducing objective disability - that is, they do not allow ME/CFS patients to actually become more active. The only improvement from GET might be saying you feel better on questionnaires. Studies have shown pretty conclusively that activity levels do not increase at all, but doctors (like your GP) get confused because the researchers say they had great results based on the questionnaire answers!

I know it can be very hard to stand up for yourself when you are young, and very ill, and dependent on your parents. But it's what you need to do to take care of yourself.

There's a very good brochure about ME/CFS at http://www.cfids-cab.org/MESA/me_overview.pdf . It's based on the "Canadian Consensus Criteria", which is what the ME experts from around the world are recommending be used to diagnose patients. It refers to a lot of the research showing our response to exertion is different, and the harms which can result. I strongly recommend showing it to your parents - they simply don't know what's happening to you, and undoubtedly want the best for you, but need the appropriate information.

 

[peggy-sue]

It must be very, very hard for you, having your parents and then doctors and "specialists" all telling you to do something which will only be bad for you.

All those "adults" have power and authority over you, and are telling you the wrong thing, and because you don't have much power or authority on your ownsome, you are going to be frightened of refusing to comply - and you will be bullied.

you will get garbage about "not wanting to get well, or you would try harder."

I'm very glad you found this forum.
There will be plenty stuff we can give you to support your position of not wanting to make yourself worse.

Just for a start,

Have a wee read of these threads:

http://forums.phoenixrising.me/inde...matic-drop-in-me-cfs-exercise-capacity.24485/

http://forums.phoenixrising.me/inde...ion-transcript-and-video-november-2012.21357/

Loads of good stuff to show them!

 

[peggy-sue]

Something else you might be able to talk to them about is the fuss that has been made over Esther Ranzen's daughter, Emily, who has been in the news a few times becuase of her "remarkable recovery" after some expensive private psychological treatment that forces the sufferer to pretend they're "not "doing" ME any more"

Poor Emily was in the same position as you are. Being forced to push through and pretend she was better, to please her parents and the doctors and the therapists - but not really being better at all.

It was eventually discovered she had a completely different illness - she had Chron's disease, not ME/CFS at all.
Fortunately, she didn't have ME and was not made a lot worse by the "threatment".

If you have been diagnosed with ME/CFS in the uk, you really haven't a clue what you've got - and neither do those giving the diagnosis.

 

[Kati]

Dear Ambrosia_angel
Please check out Invest in ME charity and ask them for support. They are on Facebook.
What you have is real, we over here all know that, however doctors are not up to speed.
Now is not time to give up or to give in. If you know that exercising is bad, please don't do it. Keep on reading, present evidence to your therapists and to your parents, and continue to hang out over here with people who understand.

You are not alone.

 

[peggy-sue]

Super research here that you can show anybody who tells you to keep on pushing!

http://forums.phoenixrising.me/inde...eral-muscle-and-potential-regulation-by.3142/