when does it stop getting worse???

[taniaaust1]

Thou learning to pace and putting myself completely first before all other things, was essential to my improvement (i wasnt left with any choice but to learn how to do that after the ME kicked my butt and left me completely bedbound and unable to even look after myself for 9mths.. so after that happened and I started to improve enough to get out of bed and go to the loo and shower on occassions.. I KNEW I had to put myself first.. I didnt want have no choice but to have to spend another year in bed!!)

Finding out the abnormalities I have is the other thing which has been essential for my improvement as I platoed at a point when I'd finally got the pacing right and couldnt get any more better then I was.

So many things may stop it from getting worst

1/ Working with the illness rather then against the illness is a huge one.

2/ Having a good ME/CFS specialist who knows what tests to do to find the various issues which are in ME/CFS. We all have abnormalities its just a fact that many doctors are doing the wrong tests as they do tests to rule out things, rather then doing tests to find out what abnormalities the ME/CFS itself has caused.
(most doctors unless they are a good ME/CFS specialist dont even know what abnormalities there is often found in ME/CFS.. If you asked your current doctor.. does he know? There is a large amount of common abnormalities found in ME).

Once you are aware of your abnormalities.. it helps give a guide of what treatments may be most useful for your ME/CFS be it antivirals or whatever. The sooner you have a knowlegable doctor, the sooner you can be trialing things which "may" help.

Never give up cause a not knowledgable doctor has.

I know tests cost money but when we do find something which we can treat some.... the improvement may be worth it. If you are low on money.. focus on ME/CFS tests in which if something is found you can do some kind of treatment eg POTS testing if it was thought you could possibly have POTS (POTS can cause headaches esp if one is standing or has been on feet too long).

I hope you didnt put much time and money into the physiotherapy.. that is often useless to a ME patient and can actually keep them sick.

the morphine helps me do things some like taking walks....it is just so crazy how wiped out i will be after doing anyting...the mirgranes worse, memory short term, pain worse

It is quite possible that those walks are possibly causing a worsening of your condition. I wonder if you would get any improvement with doing less overall and avoiding the walks for at least a few weeks (as long as you didnt replace that activity with others). Looking after your ME may have to be put before your physical fitness. Constantly declining..usually shows that there is something you need to change. Many of us at this site couldnt go for regular walks without ending up causing our condition to start to decline.

(watch out for food issues.. they are often something which happens in ME but one can take quite a while to realise they are starting to get symptoms from foods. That was one area my realisation was slow with and like often sneaks up).

"Most" people who have ME can get improvement or at least some stability of their illness after a while. It will plato at some point but how bad things will be at that point, all may depend on the things you are doing now before that point. At some point you will figure out your illness more.

The first 5-6 years of my illness.. I didnt get into a stabilisation point.. I was either on a long path of getting worst or a long path of very very slow improvement (to remission)
It was only in my second bout of getting ME that my illness got to a point where it reached a stable point, in which it stays the same long term and without finding some kind of treatment to help more (ive got ideas), Im now stuck here at this point.

 

[justy]

Last Summer - after two years of being completely housebound i got a wheelchair that has to be pushed. Once we all got over the embarrasment of it it was great - i am finally able to go out on shopping trips and 'walks' etc with my family, and have a better quality of life. I was one of those who thought i didnt need it because i can walk very well BUT going out was always making me worse, so i had to severely restric how often i went out. Even now when i am much better than i was last year i still use the wheelchair. Today we went shopping for school shoes etc for the kids and even though i wasnt exhausted i got in the wheelchair after one shop, so that i dont get up in a couple of days feeling worse. If i get really whacked i just jump in and tune out so that i am kind of resting and i let everyone else carry on around me quite happily.

The fact that you feel you are getting worse makes me feel very strongly that you are still doing way too much.
Dr Myhill told me to do absolutely nothing until i felt ok at rest. Then and only then to slowly increase activity, pulling back if its too much. Using this method (sort of) i initially felt much worse for around 2-3 months - that was body letting go and really giving in. Then i started to feel slightly better, then more or less ok if i did almost nothing all day apart from get up, shower and cooking for family and small jobs at home. Then i had good days - over did it and spent a hellish year in a push crash cycle. Now my activity level has upped quite a lot and i dont crash so often or feel so ill all the time. Many symprtoms completely gone away. I still have to be very careful not to overdo -i usually dont listen to the warning signs and still crash, but they are small, mini crashes that with a couple of days in bed usually clear up.

This approach, B12 daily injections, magnesium and some minerals have brought me up from about a level of severe/moderate to moderate/mild

Please take care, Justyx

 

[Bob]

Dr Myhill told me to do absolutely nothing until i felt ok at rest. Then and only then to slowly increase activity, pulling back if its too much.

That's what I did when I adapted 'pacing' advice for my own use.

 

[Valentijn]

It does sound like you're still doing too much. I was at the point where all I've been doing is bathing, making dinner, going to therapy appointments, walking up and downstairs twice per day, and picking some strawberries. When I cut out everything except the stairs, I slowly start doing better.

But I'm still doing poorly, so I'll probably stop with the stairs again and get my mattress back downstairs for a while for sleeping. Then it's just the stairs 2-3 times per week for a bath. Those sorts of things really do make a difference when ME/CFS is bad enough.

 

[alwayshopeful]

I hear everyone say "having a good ME/CFS doctor or specialist really helps". Is there such a doctor? Most of us are on our own, relying on these forums for suggestions. I have exhausted all doctor possibilities in my city. Even two who "claimed" they treated CFS...and knew nothing! I am 90% bed-bound, so traveling to another city is out of the question. Are there really that many people on here who have found REAL CFS doctors? If so, I am amazed!!

 

[Sushi]

I hear everyone say "having a good ME/CFS doctor or specialist really helps". Is there such a doctor? Most of us are on our own, relying on these forums for suggestions. I have exhausted all doctor possibilities in my city. Even two who "claimed" they treated CFS...and knew nothing! I am 90% bed-bound, so traveling to another city is out of the question. Are there really that many people on here who have found REAL CFS doctors? If so, I am amazed!!

I am really sorry that there don't seem to be any real specialists in your city. Unfortunately, there are not many world-wide and those of us who do see such docs, usually have to travel. I know this is nearly impossible if you are bed-bound.

Best wishes,
Sushi

 

[taniaaust1]

I hear everyone say "having a good ME/CFS doctor or specialist really helps". Is there such a doctor? Most of us are on our own, relying on these forums for suggestions. I have exhausted all doctor possibilities in my city. Even two who "claimed" they treated CFS...and knew nothing! I am 90% bed-bound, so traveling to another city is out of the question. Are there really that many people on here who have found REAL CFS doctors? If so, I am amazed!!

Its sad.. most of the CFS doctors.. Ive found are just that.. "CFS" doctors and hence they cant deal with ME patients well esp if they have the huge range of ME issues which go with the illness. Like you.. Ive exhausted all the ones in my city (or near exhausted them.. I keep finding more everytime Ive come to believe ive exhausted them ..so far Ive gone throu 6 CFS specialists...non knowing about severe ME people). I think we just need to keep looking and keep trying thou I knew there isnt a doctor who knows much about ME in my state.

Like you.. Im not up to traveling (for me it would mean flying to another state to see a doctor who knows more on ME)... but Im still "trying" to do it thou.. in my case I need someone to go with me to help me as I couldnt fly alone as I need to be helped.

Some ME/CFS doctors will do phone appointments and take a patient on if a person can manage to get to them just once in person. So that is what I hope to be able to do if the dr Im currently waiting to get in to see dont work out .. (I probably will end up advertising for a helper person to fly etc with me). Last time I did fly when very sick.. not only did I use wheelchairs in which others pushed but the airline also put me into a seat in which there was no one next to me so I could lay down, take off and landing..was the only times I wasnt laying down. I even was able to lay down in airport (they found me a bench in a quiet place to lay down), while waiting for flight to leave.. (it thou still was quite disasterous with the ME and due to that experience I know I cant go alone.. last trip my neuro issues (tremors, seizure like activity) were so bad that they held up a plane due to it). It has been said that having oxygen with flying also can help many with ME to fly.

I thou do understand that some just cant fly without the consquences being far too bad but many if certain issues can be addressed.. eg in my case its having another person along as my carer who is willing to really push others if needed to make sure my needs are met , can still fly. Most who post at these sites probably could fly if things were done to make that possible for them eg arrangeing wheelchairs, places to lay etc etc and most importantly.. having a support person or support worker along too. Im going to find a way to fly again to see a specialist.

 

[heapsreal]

I hear everyone say "having a good ME/CFS doctor or specialist really helps". Is there such a doctor? Most of us are on our own, relying on these forums for suggestions. I have exhausted all doctor possibilities in my city. Even two who "claimed" they treated CFS...and knew nothing! I am 90% bed-bound, so traveling to another city is out of the question. Are there really that many people on here who have found REAL CFS doctors? If so, I am amazed!!

Sometimes i think when it comes to doctors, pushing the whole cfs thing is something they are not comfortable with because they cant fix the problem but can help the symptoms. Once one has a grip on what meds help etc then i think its best to be quick with appointments dont push the cfs thing much, eg say sleep is crappy what can u give me for sleep etc or for pain. Sleep, pain and mood are what a GP can offer a patient with cfs and i dont think we can expect anymore unless we see one of the gurus who is using the sexy treatments like antivirals, maf etc etc. Also good for a yearly basic blood tests. otherwise get in and get out. after that i think one is best to look out for an intergrative practioner or a good naturopath maybe to help deal with cfs more directly, these guys are also good to deal with hormone/adrenal issues. Plus i think its good for us to research as much as possible and become our own doctors and sites like this help alot.

thats my 10 cents worth.

cheers!!!
good luck

 

[Valentijn]

I don't have a good ME/CFS doctor, but I do have a good doctor (naturopath) who is committed to helping me. I think that's far more useful than having a crappy ME/CFS specialist.

 

[hurtingallthetimet]

I think if your doctor has no more tests to do, you need to find a new Dr. My Dr finds plenty wrong in my lab results. He has been treating me for at least 3 years. He once remarked that he had never seen levels so low, it was in regards to something with my energy levels. I found him on the co-cure.org website.

GG

thanks for the replies everyone.....gg...i had forgotten but when you mentioned low energy level lab thing...my doctor did test for something ....id taken something for it..sorry cant really remember think it was "apt" something......the medictionats/injections wasnt covered at all and had problems with taking shots couldnt bear the pain and it didnt really help i did try though...but the levels havent gotten worse so its not that they have checked...

 

[hurtingallthetimet]

I couldnt agree with Bob and Curer more. I used to think i couldnt rest anymore than i did, but in the end i couldnt afford not too. I tried out aggressive resting therapy - bed rest and doing nothing other than taking care of my own physical needs - my husband just had to take up the slack, otherwise i would have ended up completely bedbound. I paced very very strictly - at first i felt worse for a few months, but gradually over the past two years i have made very good improvements.
Take care, Justy

yes id learned about pacing from either here or another board i forget...thinik it was here...anyway i would do housework rest etc. but never really thought of it as being a treatment of sorts...not sure how to word it...just thought what one does when so tired or in pain...didnt know was plan i guess youd say for it...but i have slowed down paced myself more..

i dont do as much shopping as i use to..i do feel very guilty at times...like i am putting more work on hubby/kids which it is...its just so hard to go from being very active in so many ways..to being almost home bound...and its not just the pain and fatigue...the anxietys got much worse after i got ill and caused me to socially withdrawl..i hate traffic, crowds..etc..so many things mixed together..

but the pacing is wonderful...and it has helped me "calm down" and not feel so guitly for one thing....also on the days i do have to go get shopping, run kids to docotr dentist school ..the last 3 of coruse are things i sometimes have to do...have no choice...but for those and eveen the shopping i will pace myself in the store and not walk so fast becuase when i get anxiety panic i walk fast...or even in car when i start to feel anxiety panic...i will tell myself to slow down my mind that everyting will be ok etc...i guess that would be called pacing also? but it does help some...

 

[justy]

Hi Hurting - yes the guilt is hard isnt it? I have mainly gone through that one now and we are all settled into a new way of being as a family. There have been a lot of things i could not do, but now due to resting more (it is a therapy) i am able to now do more with my family and take some of the slack back off my husband.
If my kids needed the dentisit then my husband has to take them. They get a school bus and if there are extra activities etc he takes them or else a friend or another mum does or else they just dont go/do it.

I also had the terrible anxiety thing, which left me afraid to go out alone and with terrible panic attacks. That has mostly gone now, but i still dont go out alone. My GP very sensibly described it as reactive agoraphobia - whihc of course means it wasnt a phobia initially as it was rational - i was afraid of feeling dizzy etc when driving because my M.E does make me dizzy and vulnerable etc. But now i am feeling a bit better i am learning to go out again - at least short distances to take kids somewhere nearby. Im not quite there yet as i often have days where i feel too unwell or too afraid, but i believe with improved health the confidence will come back.

I see the anxiety as a protective mechanism - it stopped me from pushing even harder through the symptoms when i didnt know what was wrong with me, it stopped me from overdoing it even further. When i finally gave inot this and just went to bed for a few months my anxiety diminished massively. When you have M.E and severe pain (as i know you do) then you are relying on your adrenals to keep you going - pushing them harder and harder to keep you upright and functioning. Eventually they will become exhausted, causing a viscious circle of anxiety and exhaustion and further demands on the system, this leads to a big inability to handle stress of any kind and the whole thing keeps going round and round. Truly resting and giving in to the illness will alow some healing to occur. Then i suggest a good naturopath or an M.E doctor to get you back on track.

Take care, Justyx