How often is ME progressive?

[Sushi]

Not sure why it's difficult to say where you are. You say you are improving... so that's great even if the path way is erratic.

Though I can't guess the "natural" course of the illness. For me, it is treatment that makes the difference.

Sushi

 

[Keela Too]

@Sushi

Ah okay.... I was simply asking about trajectory, no matter what treatments were taken.

Out of interest what was the treatment that you took that turned your condition around?

Edit... see where confusion came now... the bit in the header.. about "in nature"... hmmmm...

 

[Gingergrrl]

@Keela Too I really feel your frustration and I think the bottom line is that literally no one knows why one person may get better and another person may not.

As best I can see it there are so many different factors that can come into play. I do think pacing and resting are really important as I was ignorant of this in the beginning which I am sure caused me more damage.

I do think there are some supplements that can be helpful but they can vary from person to person.

I also think having a good support system is helpful and finding doctors who understand (which took me two years of searching to get to this point.)

I do also believe that anti virals have helped some people but as far as which group of people they work for, it is a role of the dice like you said.

 

[Sushi]

@Sushi
Out of interest what was the treatment that you took that turned your condition around?
Edit... see where confusion came now... the bit in the header.. about "in nature"... hmmmm...

It hasn't been one treatment--rather a combo of several approaches before one period of improvement and several other different approaches in the last few years.

For each of us, there seem to be many aspects to our illness (not by any means the same aspects) and I and my doctors have tried to target different aspects in some kind of logical order.

Sushi

 

[Mia Dit]

I hear what you're saying. Bouncing back after pushing myself has not been my experience. My inability to bounce back to previous levels once a setback has occurred is very concerning. Recently I had a bad spell and was bed/sofa ridden for several weeks. Once I started feeling a little better I tried to move around a bit. I soon realized my strength in my arms and legs was greatly diminished. My coffee cup feels heavier, and I've had to use a smaller cups and glasses so I don't drop them. My husband picks up the plates so I don't break them. I know this sounds nuts, but it's the way it is.

One of my few remaining plants was about to die, so I picked it up to water it in the sink only once it was watered it was too heavy for me to move back. It's in a 6x6 container for pete's sake! How can it be too heavy to carry without causing my arms to shake? April of 2013 I carried a 30 pound book bag every day to school and walked with that bag at least 2 miles a day, and I did it with a smile on my face. I loved going to the university.

The other thing I find interesting is the progressive symptoms severity. Vibrations that were only in my hands are now in my hands and both legs. Intermittent ice cube sensations in the upper thighs are now in arms and legs. This progressed to alternating ice sensations with severe burning in the upper legs. The vibrations remain regardless of ice or burning. Thank goodness for lidocaine patches. They cut all the ice and burning feelings. I still feel the vibrations, but the vibrations don't hurt.

 

[Mia Dit]

Mine was progressive untill I started taking the immune modulator. That was the turning point tp slowly improvement.

I'm very curious about the immune modulator? Do you mind disclosing what lab work you had where the values were far enough above/below normal to spur your doctor into action.

I feel like my doctor is going far too slow with my treatment of symptoms, which he said are mimicking MS. I don't have MS thank goodness, but I don't know what to do about the slow investigation of symptom management or what lab test to ask for. I like my doctor and he's been treating CFS for twenty years. He's the first doctor I've spoken with that knows more about ME/CFS than I do, but he has still has not tested my NK, T-Cells, etc., and he has not followed up on the year old labs and MRI's that were abnormal.

Peace,
Mia

 

[Gingergrrl]

Mia, Is there any way to get your doctor to follow up on the labs and MRI from a year ago?!!! How does he explain this? Even if he is knowledgeable and a great person, he's got to follow through to be able to help you. Why is he so slow?

 

[Mia Dit]

Mia, Is there any way to get your doctor to follow up on the labs and MRI from a year ago?!!! How does he explain this? Even if he is knowledgeable and a great person, he's got to follow through to be able to help you. Why is he so slow?

Great question. You're right absolutely correct he needs to follow through, but I need to learn how to better navigate my appointments and ask more relevant and direct questions.

Peace,
Mia

 

[Cheesus]

I am concerned that the results of this poll are skewed. Those who improve over time are more likely to be well or relatively well and thus not posting on a forum that is deeply embroiled in the struggle against illness. It is therefore unsurprising that, at this stage, a downwards trend seems to present the overwhelming majority of cases.

Even if there is ultimately a very high turn out for this poll, I don't think results can be extrapolated and applied to the CFS/ME community generally. Rather it can only be applied to people who currently post on CFS/ME forums. Having said that, I don't think the fact that someone engages in a forum is indicative of their ultimate disease trajectory, as, if they left the forum on becoming well or relatively well, they would again become underrepresented.

 

[Keela Too]

I am concerned that the results of this poll are skewed. ..........

Totally agree, and indeed made that point in the original post.

I'm aware that those who are on a recovery trajectory may not stay around on the forum, so their experience may be under represented in the answers.

Actually there may be another group under-represented - those who were on a downward trajectory but are no longer even well enough to visit or vote in the poll. I'm aware of several Facebook friends who no longer post due to ill-health.

However the results are still interesting. Reading posts, I was getting an impression that there were more folk who were fairly stable, than the results here actually show.

Does anyone know if there are any papers published showing long term outcomes?

 

[Revel]

This is an awful thing to admit to, but hearing of others whose illness has followed a slow downward trajectory has actually been of some comfort to me.

Before joining PR, I found the media (especially in the UK) to be awash with positive articles about how individuals have beaten ME. Even the NHS website crows about how most PWME will make a substantal recovery over time, even full remission.

I wondered where I was going wrong, because this has not been my experience, far from it. Nobody ever told me that I could worsen over time.

I am grateful to know that I am not suffering alone, that it isn't my fault that I'm still sick. It hasn't helped my physical being, but my mental state has improved and I have become less despairing and more accepting of my circumstances.

 

[xchocoholic]

Imho, age, level of severity, co-morbid conditions and length of time ill play into this too. I'm 59 now and became ill in 1990. And although eliminating gluten, etc in 2005 helped I was sick too long before eliminating these.

Overall I'd say I'm declining but who doesn't at 59. Lol.

Tc .. x

 

[Min]

My M.E. has been progressive over 30 years, with new symptoms being added. No doctor has ever asked what my symptoms are, or offered hope of any effective treatment.

 

[Keela Too]

This "positive thinking" malarky has a lot to answer for - whilst I agree that a positive mental attitude helps us to survive day to day, I think it's whole importance has been stretched much too far.

It does not help patients:
- to fudge the real truth in order that they stay in a state of false optimism.
- to persuade them that having moments of despair is harming their recovery.
- to deny their very real concerns about illness severity.
- to white wash the risks of over exertion by pushing exercise (and those happy hormones)
- to persuade them THEY are doing it wrong if the don't recover!!!

I'd much rather be told that the illness has the potential to be devastating, and that we should approach all exertion with caution. How many folk would be less ill now if told that at the first hint that they might have ME.

I think there is a place for some help from counselors and physios. I think adjusting a lifestyle DOWN far enough to prevent damage is a VERY difficult process. Help with that would certainly help folk cope. Then perhaps help to cautiously approach our sustainable level, but THEN once found, we need to be helped to back-off that level rather than challenge it continuously.

My doctor's suggestion (I don't blame her as she was just giving out info she had been given on what to suggest for chronic fatigue) was anti-depressants and 3 short walks a day. The first I refused, the second I attempted to my detriment.

Much better if I'd been prescribed some rest.

 

[Mia Dit]

I am concerned that the results of this poll are skewed. Those who improve over time are more likely to be well or relatively well and thus not posting on a forum that is deeply embroiled in the struggle against illness. It is therefore unsurprising that, at this stage, a downwards trend seems to present the overwhelming majority of cases.

Even if there is ultimately a very high turn out for this poll, I don't think results can be extrapolated and applied to the CFS/ME community generally. Rather it can only be applied to people who currently post on CFS/ME forums. Having said that, I don't think the fact that someone engages in a forum is indicative of their ultimate disease trajectory, as, if they left the forum on becoming well or relatively well, they would again become underrepresented.

Hi Cheesus,

Another variable is the number of people who are too ill to participate. Obviously this only complicates the results since the very sick and the progressively improving people may not be participating. If I had more energy I wouldn't be on my computer. I'd be moving around or trying to get the imprint of my butt out of the sofa cushion.

 

[Cheesus]

Hi Cheesus,

Another variable is the number of people who are too ill to participate. Obviously this only complicates the results since the very sick and the progressively improving people may not be participating. If I had more energy I wouldn't be on my computer. I'd be moving around or trying to get the imprint of my butt out of the sofa cushion.

Hopefully the latter far outweighs the former!

 

[misskatniss]

@Keela Too I would like to like what you wrote 1000 times!!!!! That´s it. Yesterday I had that attack of total despair etc., and I told my boyfriend how sick I were of people saying "you are going to be fine (soon)" when I am very sick for almost a year with at the beginning worsening (due to the mental institution and the wrong treatment) and since then slooooow recovery from part of the damage they did to me (no recovery compared tot he onset, though).

And I was and am scared to death because I have that very important appointment at the only ME doctor here which is 30 miles away, and I am afraid of further relapsing, tube-feeding and so on (at present, I am almost constantly bedbound with POTS, max. time out of bed including eating (NOT sitting), going to the loo and taking some carrot out of the fridge 30min / 1 h daily). I need to go to him as I need the diagnosis for my benefits claim. But I am so afraid. Will get there in the rear of a car, hoping that I don´t get light sensitive and pain for too long after it... Or even further damage :-(

People often think it´s catastrophic thinking to be afraid of further damage / debilitation. It isn´t, and I wished so much, someone would just say: "I understand that you are horrified. You are allowed to feel that way." Cause I am allowed. That positive thinking stuff is often like pressure. And I used to be a very cheerful person before ME. Feel like a failure cause I can´t smile mildly distributing buddha wisdom out of my bed. Not the ideal sick person. Just very often scared of all that flares and crashes and relapses, and that stuff IS scary.

I wish all of you guys the best. I haven´t given up on small degres of recovery, but I can´t stress myself with the gap between how I am and how it develops and people telling me I´ll be fine having family, climbing the Kilimandjaro etc. when I can feel that it is very unrealistic to see that happening. And I would be happy with much less improvement, either! Being one day able to get out, walk a couple of minutes, buy some icecream and return. Without relapsing. That would be mere bliss.
Bless you all!

 

[Keela Too]

@misskatniss Sorry to hear you are so ill and forced into the position of having to risk your health further to "prove" that you are ill. There is something so wrong with that logic.

Hope the appointment goes right for you. Sending many gentle hugs, and good wishes. xx

 

[Countrygirl]

"Keela Too, post: 511865, member: 11937"]This "positive thinking" malarky has a lot to answer for - whilst I agree that a positive mental attitude helps us to survive day to day, I think it's whole importance has been stretched much too far.

It does not help patients:
- to fudge the real truth in order that they stay in a state of false optimism.
- to persuade them that having moments of despair is harming their recovery.
- to deny their very real concerns about illness severity.
- to white wash the risks of over exertion by pushing exercise (and those happy hormones)
- to persuade them THEY are doing it wrong if the don't recover!!!

I'd much rather be told that the illness has the potential to be devastating, and that we should approach all exertion with caution. How many folk would be less ill now if told that at the first hint that they might have ME.

This is excellent Keela! I think it should be pinned above the bedhead/sofa so that visitors who make such crass comments as'I had what you have last week' (said to me after years of severe illness) or 'I really do not believe that ME makes you that ill. I had it for a couple of weeks myself after a heavy cold and I didn't let it stop me having a normal life!' are warned to keep their insensitive and damaging opinions to their uneducated selves.

C.G.

 

[ahmo]

It's only been a few months since I raised my head out of the methylation forum to see that there's a whole world happening on pr. One of the most valuable things for me, along with the emotional support, has been understanding how this illness has been progressive for so many. It has made me extra grateful for the gains I've made, and much more respectful of my limits. I've been very fortunate that my downward trajectory turned around nearly 3 years ago, first from eliminating gluten, then from methylation protocol.

@misskatniss sending you all best wishes, especially for your Dr visit.