In a crash, I am a mess...

[Sushi]

I fit in only because I am comfortable here and feel like I have a more intimate relationship with people on PR.

We are all "one of a kind" it seems but we fit in here because we care about each other and are all looking for answers.

I don't have much to add to the many responses on this thread except to send very best wishes and 's for the coming days and surgery.

Sushi

 

[Misfit Toy]

@GracieJ -thank you and I am sorry for your collapse in health. It is baffling. Today I sit here feeling like....that's it. I am in for the weekend. I quit. I am at the bottom of a month long hell. Between migraines and headaches from the Plaqueni and now being off of it and being worse, I quit for now. I need to get through my surgery and I want it now and I am going in locked and loaded even with how ill I feel. I don't want to wait. There will never be a good time. I know how my body works. This is the best time. It's January, it's freezing, not a lot is going on, and yup, maybe the surgery and the pain block they will put in my arm will help my body overall. And then, I will have weeks of doing a whole lot of not much. It will make me be indoors and I won't be able to do much. Maybe that's a good thing. I am not worried about all of the chemicals. I guess I should be, but I gotta get this done. Sometimes a trauma like this calms down all of the pain throughout my body because your body can handle only one trauma at a time.

This guy is the 4th leading hand specialist in the country. He is in his 60's and will retire real soon....I can't wait on this one because I don't want anyone else to do it.

 

[Misfit Toy]

@soxfan -do you have lyme disease? I am sure you have been to a neurologist. I have pain in my hip/pelvis that I never mention. I don't want to, but it's bothering me. There are times I can't even get out of bed. I am assuming it's EDS. I am not sure. Since I was diagnosed with that also.

Anyway, thank you so much and you said it...I never know when I wake up how I am going to feel. It's so haphazard and it sucks. I want to be able to plan something and stick to it.

 

[Michael_venice]

@Michael_venice -I'm sorry you are also sick. It sucks this not fitting in feeling. ME folks are most like me because they are so ill from so many meds, etc. and really ill. I feel to blame for my illness. Like, I must be doing something wrong. People talk on the Sjogrens board about quitting sugar, gluten, etc and they are so much better. Why aren't I? I don't eat gluten, milk, soy, etc. My inflammation is no better for it. I'm sorry, but I want a piece of chocolate.

Anyway....

@Revel, been meaning to get back to you. Been too unwell, my friend. To better days ahead for all of us.

I go through "I'm doing something wrong" on a constant basis. Even if I just go a little extra and try to make food that's a little more enjoyable, and then crash....I have this self-loathing/upset....I've told people it's as if I was getting really drunk or something and ruined future time/days because I was so hung over. Except...I'm just doing regular life things, I'm not drinking or hurting myself. I'm just trying to do normal things.

Also agree about what people say they do and how much better they feel. There's hardly any of those things I haven't tried myself, and I haven't felt 2% better from any of it. I talked to a really nice guy a couple weeks ago, he was very sick, bed bound, etc. He told me about some Danish 'vaccine' pill he took, but also that he started eating vegetables and juicing and back to normal in a couple months after years' sick. Well, I was eating/juicing and all of that before i got sick, during and now. I felt very deflated. Nothing seems to help in my case.

 

[Countrygirl]

@Misfit Toy I have no words of wisdom, but reading your first post of the thread reduced me to tears. I so feel for you and wish I could wave a magic wand and solve this horrible situation. I know only too well how this wretched weapon-grade insomnia affects us. It is torture! For me the answer is surmontil and baclofen with a certain 'magic' ingredient to give it a kick. I am also taking hydrochloroquine, but for scarring alopecia (another autoimmune condition), but unlike you I don't have headaches with it, but don't know if it is reducing the inflammation and pain, although it does seem worse if I stop it.

All I can do is send you my love and my very best wishes for a problem-free surgery. I will keep checking PR to see how you are getting on.

 

[barbc56]

@Misfit Toy

I'm so sorry you are going through this. I don't know what else to say that hasn't been written in this thread, but I hope things start looking up for you soon.

You are probably right about the surgery. You know how your body works and if the timing works for you, I'd get it done and over with. Just keep in mind your symptoms and relay them to your doctor. Hopefull, if need be, you can always cancel.

Take care. That also goes for anyone else here who's going through a rough time.
Barb

 

[helen1]

Thinking about you @Misfit Toy and sending good thoughts and gentle hugs.
That's interesting about the Fentanyl patch @Misfit Toy. I wonder if you've tried other supps and meds transdermally? Some of us including ahmo especially have had good success with footbaths and transdermal routes. It's surprising how they do seem to be absorbed through the skin.

 

[Misfit Toy]

@Michael_venice --I never beat myself up for doing things. I am not trying to tell you how to feel because I self loathe on a regular basis, but doing things, cooking meals, we "have" to do that to survive and to spruce up a meal....we should not feel bad for that or if we get sick. We should feel mad. Like why? This is normal stuff. Self preservation trying to take care of yourself. You are doing nothing wrong. Nobody can fault you, or me for walking up stairs, cooking a meal or taking a shower. If we get sick, the feeling I feel is what is this illness?

I have self loathing because I can't follow these diets. I just can't. I am totally gluten free, milk free and soy free, but I refuse to not have a chocolate bar or eat something with sugar. That is supposed to be one of the things that those with autoimmune diseases should avoid. But, I can't drink and there is so much I can't eat...I don't want to deprive myself of something yummy like a piece of my gluten free apple pie. I need a sweet a day.

But, according to the sjogrens board, I am causing my own inflammation. My friend said to me yesterday, "MT, lots of people eat sugar and don't have inflammation. Look at people who do drugs, drink, smoke and they live productive lives. You do the best you can. You have this thing because of something that is up with your body....it's not your fault."

I needed to hear that. I really needed to hear it. Same goes for you.

 

[Misfit Toy]

@helen1 -I used to take Ancient Minerals magnesium transdermally and it worked great, but it doesn't do zip anymore. Not sure why. But yes, some meds for me are better on the skin. I did foot baths that were detoxifying but they never did anything.

 

[silverseas2014]

Misfit Toy---Hello. I am sorry you're feeling so bad. A couple of things that help me sleep:

1.) Benedryl + Tylenol (please disregard if you've tried these or simply can't take them)
2.) Progest-E Complex (drops)--made by Kenogen. Available at www.arkofwellness.com, www.longnaturalhealth.com, etc. (developed by Raymond Peat) The drops make it easy to dose/titrate.

In good health,
Cheers,
Silverseas2013

 

[rosie26]

Hi @Misfit Toy. I just lit a candle for you. I hope all goes well with the surgery. It sounds like you have a good surgeon there. I will be thinking of you. x

 

[Misfit Toy]

@silverseas2014 -this is progesterone? Why progesterone?

 

[taniaaust1]

@soxfan -do you have lyme disease? I am sure you have been to a neurologist. I have pain in my hip/pelvis that I never mention. I don't want to, but it's bothering me. There are times I can't even get out of bed. I am assuming it's EDS. I am not sure. Since I was diagnosed with that also.

Pain in hip/pelvis can end up turning out to be refered pain coming from the lower back but one may not realise at all it is from the back.

I had pain in my hip/pelvis which got to the point where I couldnt even put pressure down onto one of my legs leg to walk as it flared the pain up in hip/pelvis so badly. I went to a chiropractor who checked me out and told me it was my lower back, he fixed the issue by working on my lower back (and my hips a bit too).

You may want to consider seeing a "good" chiropractor to see what they have to say about your pain in these areas (dont just go to any but try to find one which comes highly recommended by others).

Im glad to hear you got a nights sleep due to your patch. Its interesting how much our bodies can be changing with the ME/CFS eg I had problems with dairy for up a couple of years (it gave me headaches) but now are fine again with that.

 

[Misfit Toy]

@taniaaust1 -I am wondering if I need an xray, cat scan or an MRI. I am not sure. It's been going on for awhile. Since the summer. IT feels like a tear and it acts up when it's time for my period. It's so strange.

 

[Kati]

@Michael_venice --I never beat myself up for doing things. I am not trying to tell you how to feel because I self loathe on a regular basis, but doing things, cooking meals, we "have" to do that to survive and to spruce up a meal....we should not feel bad for that or if we get sick. We should feel mad. Like why? This is normal stuff. Self preservation trying to take care of yourself. You are doing nothing wrong. Nobody can fault you, or me for walking up stairs, cooking a meal or taking a shower. If we get sick, the feeling I feel is what is this illness?

I have self loathing because I can't follow these diets. I just can't. I am totally gluten free, milk free and soy free, but I refuse to not have a chocolate bar or eat something with sugar. That is supposed to be one of the things that those with autoimmune diseases should avoid. But, I can't drink and there is so much I can't eat...I don't want to deprive myself of something yummy like a piece of my gluten free apple pie. I need a sweet a day.

But, according to the sjogrens board, I am causing my own inflammation. My friend said to me yesterday, "MT, lots of people eat sugar and don't have inflammation. Look at people who do drugs, drink, smoke and they live productive lives. You do the best you can. You have this thing because of something that is up with your body....it's not your fault."

I needed to hear that. I really needed to hear it. Same goes for you.

Yes, diets is complete BS. Keep on eating your sweets and forget about people who tell you what to do and not to do. You are doing the very best you can for yourself.

I cross my fingers that you can get decent sleep soon.

 

[soxfan]

@Misfit Toy- I was diagnosed with Lyme and Bartonella years ago (2006) and have been extensively treated with antibiotics including IV Rocephin. I did have an 8 month remission and thought I was well but then relapsed. I was bit again in 2012 but they put me on abx right away.

I started off in 2004 with nerve pain and muscle twitching/cramps in my calves and a 24 hour flu and few weeks later. The fatigue hit me about a month after that and I have never been the same since Nov 28, 2004. In my opinion I have developed CFS symptoms because of the long lapse in treatments.

I am currently treating Bartonella again but am feeling no symptom relief from the medications which makes me think once again that it is CFS but the way this whole illness began is still extremely strange to me. I didn't start off with flu.
My first symptoms were intense calf cramping/twitching/nerve pain...that was it.

I would love to get into the Duke Hospital "mystery disease" program and maybe they will be able to find out why I am still feeling so horrible.

The only tests that ever showed anything were my thyroid (hypo), slightly elevated Bartonella titer, past exposure to HHV6 and EBV...

 

[maryb]

@Misfit Toy
- you know its true we're all so very different, I too am gluten, dairy,egg, sugar etc. free, its so hard, never have chocolate, well maybe once a year, but I have massive problems with inflammation, so is sugar free a magic bullet, definitely not, keep doing what makes you happy. I don't crave sweet things very much now, just once in a while.
Think you're doing the right thing having the surgery, sorting one problem out that you are able to can only be for the best. Lets hope things look up for us all this year.

 

[maddietod]

I clearly heard your rant against more meds, but I'm going to share this anyway. I've been taking low dose naltrexone for 3 months to boost my immune system against HHV-6. I'm in a FB group about LDN for CFS and Fibro, and tons of people on there take it for pain and inflammation. I didn't know that when I first started, and all the weird upper and lower back and neck pain went away.

If you get interested, pm me. I started too high a few times last year and quit because of side effects.

Oh - some people get help with sleep, but I didn't. Turns out I have sleep apnea.

 

[Misfit Toy]

Yo, @madietodd -I tried it. I know one woman with MS who really does great on it. And many with SS do well on LDN. I have heard. Here's what happened...I couldnt' sleep at all on it. I was on such a low dose. Like 2.5 mg, I think. Insanely low. My sleep is such a mess and then it got nuts on LDN and my pain went beserk. So, I would love to take it, but not sure how. I took it in the AM and the same thing happened. I know it helps so much with inflammation. GOSH, it pisses me off...I want that!

 

[Misfit Toy]

@Misfit Toy
- you know its true we're all so very different, I too am gluten, dairy,egg, sugar etc. free, its so hard, never have chocolate, well maybe once a year, but I have massive problems with inflammation, so is sugar free a magic bullet, definitely not, keep doing what makes you happy. I don't crave sweet things very much now, just once in a while.
Think you're doing the right thing having the surgery, sorting one problem out that you are able to can only be for the best. Lets hope things look up for us all this year.

MaryB, you are so sweet. Thank you. You make me feel better about eating my one gluten free cupcake I had today. My therapist said to me, "You know, if you want to try the sugar free route, do it...but I don't think it's going to help you that much. I mean, it's not like you sit around and eat sugar or drink soda ever. So, you will eliminate a cupcake here and there...but I don't think it's going to help to the extent that they are speaking of. A lot of them just have Sjogrens and that's it."