Can you go from severe to moderate.

[K22]

Iim

So I didn't even realize until a couple days ago that most people on here are mild/moderate people considering I'm 98% bedridden. How many people are like me that are bedridden that can't really tolerate the tv?

I'm 100% bedridden. On any CFS forum most will be mild-moderate


In answer of course. My consultant said rapid onset severe tend to do better than the gradually detiorated ones like me because the immediate severity prevents the pushing on harm that seems to create more entrenched forms. Although immediate severe ME is a shock I think prognosis is quite good compared to us long term people told to push on from mild down to bedridden who don't seem to recover much. Severe ME comes with many subgroups and I know of some who lead almost normal lives despite a year or two in bed initially

 

[nikefourstar]

@K22 really you actually know people that started out severe and got to be more functional a couples years down?

 

[Dainty]

I was 99% bedridden most of the time (100% bedridden the rest of the time) for about 7 years straight. As far as not being able to tolerate the TV, that sounds like EMF sensitivity. My computer screen and phone screen needed EMF shielding materials over them before I could tolerate being near them. During my worst times, I would go for months on end unable to even have a computer near me.

You say you went to see a doctor in the beginning and everything came back fine. Didn't the doctor tell you to come back if the symptoms do not resolve or if they get worse? There is no way a doctor ran every single test on you the first time you came in. They ran the most likely stuff. Now that it has been a month or two and you are so much worse off, you need to go back so they can investigate deeper into what's going on.

 

[arewenearlythereyet]

@K22 really you actually know people that started out severe and got to be more functional a couples years down?

@nikefourstar Please make sure your doctor has exhausted all the tests to rule out all the other diseases that could be making you bedridden. You will need to get copies of test results and check for yourself that everything has been done and the levels are interpreted properly to be sure. You will have to become the expert in you and push the doctor for an answer. It's early days yet in your diagnosis. It's possible you have something treatable? I hope so.

 

[nikefourstar]

I was diagnosed with severe cfs. I'm completely bedridden and getting weaker by the day. Is my life completely over or is there a chance I could make some what of a recovery? I'm thinking so much about death because I don't want to lay in my room every single day for years and years. Please is there any hope for me or am I just going to get worse

 

[Dainty]

Were you just recently diagnosed? Did the doctor run any additional tests in the process of diagnosing you? What sort of prognosis did the doctor give you?

 

[nikefourstar]

Were you just recently diagnosed? Did the doctor run any additional tests in the process of diagnosing you? What sort of prognosis did the doctor give you?

Just got diagnosed and I had another full blood work draw and x rays of my head. The prognoses isn't good

 

[Dainty]

Just got diagnosed and I had another full blood work draw and x rays of my head. The prognoses isn't good

What did the doctor actually say about the prognosis? Usually they are pretty detailed about the possible outcomes they foresee and the likelihood of each.

Could you explain what you mean by "another full blood work"? Did they run the exact same tests as before?

What did they say about the results of the x-rays of your head, any abnormalities?

The answers to these questions will help give us a better idea of what's going on.

 

[brenda]

Don't despair, there is hope. I had been sick for a long time with me symptoms due to various toxic assaults, when l suddenly got much much worse, was bedbound and became highly electrical and chemical sensitive. I even had to wash with bottled water only. I felt l was dying.

Today l am functioning okay and pretty active although l must stick to an autoimmune diet.

I know now that l worsened considerably after contracting Lyme disease. It follows a pattern of relapsing and remitting. I cannot take medications at all so doctors have been pretty useless to me and l got better on my own.

Initially, it was by cutting out certain foods especially gluten and dairy with a macrobiotic diet which meant for me mainly brown rice which l had to force down as my appetite had left me. Gradually l improved but it has been a long haul.

Have you looked at Lyme disease? I had to get my own lab test.

 

[JES]

Just got diagnosed and I had another full blood work draw and x rays of my head. The prognoses isn't good

You should request for testing the most common bacterial infections if they weren't included in the blood work, like Lyme or Mycoplasmas. Those are at least in theory treatable with antibiotics and can many times be cured fully. Viruses are more tricky to obtain any treatment for, but most doctors will quite easily prescribe at least a short course of antibiotics.

 

[UKmum]

Sorry to hear CFS was diagnosed though remember its not always diagnosed correctly. I think you were saying around 3 months since getting ill? Please don't despair. You have heard from lots of people on here that have been bedridden at times and have improved. I know its devastating to think that life is not going to be what you planned but there is hope and maybe just a different path. I hope you have some support around you to help with daily food/shopping/life stuff- maybe time to talk and share this with family/friends to try and help you rest as much as you can at this early stage. Hope the doctor was supportive? Are you eating? Sorry maternal instinct kicking in.

 

[Sushi]

I was diagnosed with severe cfs.

What diagnostic criteria were used and what type of doctor diagnosed you? Did they test you for intracellular infections and also for viruses? Did they do any autonomic testing and immune function? You didn't specifiy what type of lab tests were run. These details make a big difference in treatment.

Were you offered treatment options?

 

[Jenny TipsforME]

Until you're able to get more specific medical advice it is important to find ways to switch off from the worry. I know that you can't simply decide to not worry and you definitely don't want to worry about worrying too much! But you know people have said you can go from severe to moderate (and mild). Some people also go into remission. You only need one example to know this is possible for you too. Spending a lot of energy on this concern will be counterproductive.

Are you physically very weak with tired but wired in your mind? This is really hard because you can't do anything to distract yourself. I tend to listen to the radio or audio books. It doesn't matter if I follow it or not but it distracts me from my mind wandering to unhealthy places.

 

[Lissyleigh]

Yes, I have gone from severe to moderate. I suppose it's a matter of perspective as well as some might say I'm still severe (my mobility is still really poor and I rely on a scooter) but I have gone from many years house/sofabound to being able to get out and about and even do some voluntary work for two hours a fortnight.

 

[Jesse2233]

Hey @nikefourstar how are you doing?

 

[nikefourstar]

@Jesse2233 hey I'm not doing to great I seem to be declining but I'm holding on tight. Things are looking really promising with research so maybe I won't be like this the rest of my life.

 

[Jesse2233]

@Jesse2233 hey I'm not doing to great I seem to be declining but I'm holding on tight. Things are looking really promising with research so maybe I won't be like this the rest of my life.

That's exactly right, hang in there, technology is accelerating and converging in very exciting ways. We're both going to get well and have good lives