Get worse before better?

[Chickens44]

I have read lots of posts about reversing out, but just wanted to have a moan. I seem to have a different symptom each couple of days, and always worse than I had before diagnosis. One minute I’m completely exhausted, and the next I’ve got chronic nerve pain, then sweating following small exertions. It’s so wearing. I’m trying to stay positive. Dr K says all my levels are good, ferritin, folate and B12, I do need to keep working on my vitamin D, and it is rising slowly. I’m three months into my protocol for info. And all correct cofactors, and a healthy diet.

I just want to cry, partly I think because I have no one to moan to except my two dachshunds, and I think even they are bored with my moaning now! I just want to feel well again, and be able to do things I did before. I have been known to get out my drill, saw and screwdriver and make a chicken run! But now I do 20 minutes gentle weeding and I’m a complete mess.

I’m sure most of you have experienced this, and have either come through the other side or still going through it. I just want to know that it will be worth it. As it might just be I do have fibromyalgia and will always feel like this 😩

[Chickens44]

sorry folks, I feel like I’m a scratched record, keep repeating myself!

[JesusMercy60 in reply to Chickens44]

good morning Chickens44,

I have to tell you I'm at three months as well on eod inj. on cyano b12 and multi's and small amount of iron liquid. I am able to get around a little and do baby chores, but otherwise I have to go lay down again. it all comes and goes through out the day some moments I'm like oh wow I feel pretty ok at the moment then I'm down again, both emotionally and physically it comes and goes, it was a lot worse before I could not put on a sock on my feet the pain was so bad. like at the moment my feet don't hurt at all then tonight they may be aching again. when I take any thing oral like my multi's I get all sorts of different reactions in my brain and body so I'm sure I was deficient in other vitamins as well. I'm sure this is all reversing out and the nerves healing. I've read it takes a long time. I have to read the positive posts from others to keep going. I'm like you I want to ask everyone that is on the other side now, how long did it take you and in three months what were you going through, because my mind starts making me wonder if i'm not doing the right thing. everyday I go through these thoughts. but I was soo much worse before I could not even go out of the house mentally and physically.

[Chickens44 in reply to JesusMercy60]

I think I just need reassurance it will get better. But no one can guarantee that unfortunately. I was doing okay before, not great and had some bad days, but I used to go swimming a couple of times a week, and managed to keep on top of things, but I seem to be going one step forward, one step back at the moment, and repeat. I keep reading the positive posts too - it keeps me going! I do keep a symptom diary, although not every day, and one symptom will get better, and then another gets worse. I sometimes wonder if there is something else going on that I dont know about, but everything else seems to be working fine. I think a lot of people feel like that.

[Nackapan in reply to Chickens44]

I often thought 'they ' had missed something.My daughter wax misdiagnosed with fibromyalgia.

We all heal in different time frames.

It took s long time fof me as caught late and treatment late.

Time

Patience

Pacing

Sometimes the improvements so subtle you don't even notice.

The bath water used to move lije waves hurting my head .

That gradually stopped.

I coukdnt stand long enough to have z shower .

Then I coukd .

Awful 'stuck to thf spot' leaden legs improved and so on

Just keep going .

To date nothing else had bed found to treat in my case.

Accept every test to rule othef things out

[Nackapan in reply to JesusMercy60]

Ag the 3 months mark I wax very ill It wax a challenge getting out of bed yo eat at a table .

Often nausea wouid take hold or balance off .

I had a continuous migraine going on sometimes peaking which at times 2as intolerable.

Was on alot of pain killers .

I couldn't open a Christmas present ad the paper made too much noise .

I coukd go on .

I truly thought I was slowly dying 😪

So I would say its very early days .

Keep going .

It's a cruel rollercoaster.

Just do jot try to push through as it sets you back.

[Chickens44 in reply to Nackapan]

Thanks for reply. It does give me hope. I suppose every night when I go to bed I think I am going to have a better day than yesterday. And it doesn’t come. But I am doing better than a lot of people so I must be grateful for little things.

[JesusMercy60 in reply to Chickens44]

yes your are correct just don't push things, I was doing better as well before, I was walking for 1/2 hour but I found out I was using up all my storages, my feet started to get worse oh and I was only on oral b12 liquid, then when I started to inject eod is when I really started to have these symptoms so I am sure I was not treating hardly at all with the oral, now my nerves are getting the treatment they really need. I also am thinking like you with wow I did better today so hopefully tomorrow will be better, but nope a few better days then a few worse days. I do try and stay laying down even if I feel ok just to get the rest we need to heal. I'm hoping in a year like everyone else they say after a year it's way better. even my personality suffers and that I really don't like. I feel more nervous and more unsure of things when I'm out talking too much for too long I start to feel strange or maybe anxious. I'm hoping that will all go away too.

[JesusMercy60 in reply to Nackapan]

hello Nackapan,

yes that is also a strange symptom the noise thing. I too was bothered and it would set off nerves with others talking too loud and laughing in the house, and If I had a friend come to visit me I was totally panicking , it was the worst. even my baby grandkids, I missed them so much but could hardley stand being around anyone.. I would just find peace in bed in prayer. anything else was horrible. and yes we were really dying. I often wonder how long of a death that would have been, I know one thing it was painfull and lonely and maybe like that getting worse for a long time. but this forum was an answer to my prayers too finding all the support is here with you all.

Rosina