NEWBIE to the forum

[DJScott]

I hope that I'm posting this correctly. I've never joined a group like this, but my doctor is the one that said I should find a forum for support. I chose this group because I live in the Dayton area, and my doctor is from here. I thought that might be helpful.

Let me introduce myself. I was "officially" diagnosed with fibro about 2 years ago, but I have dealt with many of the symptoms - especially the chronic fatigue - for years. I had been off of work several times with the CF, but after being off with an unrelated problem (neck), my boss made it abundantly clear that they did not like me being off on short-term disability so many times throughout the past years. For that reason, I suffer without any possibility of taking off to recover. The last couple of years have been hell as I have gotten increasingly worse.

I'm sure there is some great information already within this forum, but with the "fog" going on within my brain, I'm not sure I can exert the energy at this time.

I'm in constant pain and exhaustion. I have learned that I can get up, go to work, come home, and basically do nothing until about 8:00 when I go to bed. Although I want to do things on the weekend, I can't do much of anything or I will pay the price for the next several days.

There are a number of questions that I have, so hopefully being part of this forum will allow me to ask them, as well as get the emotional support that I so badly need.

Thanks for listening, and I hope to get to know you all as I join in the discussions.

 

[Tipnatee N]

Welcome DJScott 8)

Me too I have been with CF for 7 years and each year just kept getting worse interms of energy expand like the spoon theory . I hardly have any when I wake up and nothing left in the end of the day yet could hardly sleep or waking up refreshing. It's an endless torturous condition that no matter what I do I can't seem to find any relieve from.

The only time I did finally got the energy was when I've got evicted . The tramatic adrenaline rush helpped me on my feet to walk like a normal human ( slow but like a normal human being) for just one month while trying to find a home to stay bouncing from hotel to hotels. After that one month of energy passed and adrenaline are completely gone , and I'm back to crawling again with no rest of unending pains and anxiety from it

Maybe I should set my self on fire for adrenaline boost each time I need to do something important :shock: .

 

[DJScott]

Thank you for your reply Tipnatee N!! I know it takes time for a NEWBIE to get accepted into a forum and to start communications. I don't know why I have resisted so long.

Like you, I seem to survive during times that are extremely stressful, and get that adrenaline rush like you suggest. That's why people can't understand - because they see me seem to be "ok" - but then I completely crash and am in so much pain, and extreme exhaustion that it's hard to function. I thought maybe that was unusual, and made me question myself!!

 

[Tipnatee N]

Oh no , I would NOT suggesting any one to set them self on fire for that reason whatsoever lol . Seriously Please don't :shock:

Some times ago there were a suggestion on D-ribose supplement for the CFS/ME problem. I couldn't find it in any phamacy near by so I haven't yet try it yet, But I might try to order that online to see if it help me in someway. Desperation can make me do just about any crazy things to get some relieve. I even just ordered coca leaf tea just to see if that woukd help. Since I don't plan to see another doctor again in the next few months I don't have to worry so much about the possiblity of drug test gone wrong at the monent.

And since I've been here I haven't yet see any Newbie problem of fitting in with any members here , not even once. I think we love newbies here alot more than you believe, cause newbie mean new perspectives. Freshly new idea can give us more new way of fixing the old problems too. So please enjoy your self, cause that's something we hardly can get in our everyday life.

 

[Brenda K]

Welcome DJScott
Ahhh the dreaded brain fog. We are all in the same boat there so no worries
I just joined the group recently too and cannot say enough how glad I am to have found this forum.
It's just so nice to be able to talk to others who are going through the same thing.
Totally understand the well you seem fine attitude. They don't realize that maybe this is the one day this month that you aren't suffering as bad as usual. I only go out to town when I am feeling well enough which is not very often. I have learned when people say how are you doing.... they don't want to know so I paste on my fake smile hoping the pain doesn't show through and say oh I'm fine. Oh I am sooooooo not fine. But whatever... it's what they want to hear and it's just easier that way I find.
Hope you can take solace in the fact that you are not alone!

 

[vickythecat]

welcome to the forum!

This is definitely a place where you can ask us anything. We do our best to share experiences, share tips, discuss what helps and what not etc. And most importantly, we are here to let you know you are not alone.

This forum really means the world to me. If you want a forum with true fighters, inspiring individuals with no BS and genuinely friendly and understanding people, you are at the right place.

 

[DJScott]

Thank you Brenda K... I sooooo know what you mean. I just say "I'm fine" all the time. But sometimes when I'm really bad, all they have to do is look at me and know that I'm not doing well. My sisters were visiting this past weekend (one from CA, one from KY) for my mom's 97th birthday. Honestly, she is doing better than I am! They saw several times what happens to me when I overdo, so I think they are realizing this is not a joke!!

 

[DJScott]

Thank you vickythecat... I look forward to getting to know all of you and getting some support from people that TRULY understand.

 

[diamond]

Welcome DJScott....you will definitely fit in....everyone does...we all have things in common...and we always welcome a newbies thoughts and opinions.

We are a special group of people and whatever level your symptoms or whatever you are experiencing this is a safe place to let off steam! x

 

[sunkacola]

Welcome to the forum.
Ask all the questions you want to, and complain if you want to also. We are here to support each other.
The brain fog is the most annoying thing to me, actually.
The pain is just pain, it is sort of its own kind of thing and I just endure it.

But for instance there are things that I make and have made for years, to sell. I know how to make them!! But some days if the brain fog is operating I will make one stupid mistake after another while making them, necessitating going back and un-doing the whole thing back to the mistake in order to fix it.

The other very annoying thing is, as you say having to say "I'm OK" when you are not. You cannot tell people how much pain you are in because they won't believe you. They will say you look just fine. So this tends to be isolating for us, and that is why a forum is a good idea some of the time.

 

[DJScott]

OH MY GOSH... I just watched the video by Dr. Rutherford and Dr. Gates. I was taking notes like crazy! Everything they were talking about fit me to a "T"!!! I never had any idea how all these things are connected.

Triggers...
- Epstein barr/mono - Yep! Had when I was in high school
- Pnemonia - Yep! Had when I was pregnant with my son. Which then led to...
- Stress
- Thyroid problems. - Yep! On medication

The list of things that patients come in with I could check off one after another. I mean, simply unbelievable.

You know what was nice? To actually hear a DOCTOR say it's not in your head! To hear a doctor say that often exercise just leads to more pain. To hear a doctor say that all the different doctors you are going to are each putting you on different medications to treat your "symptoms", so you end up with a handful of meds. As for myself, my meds include... Thyroid - CHECK. Cholesterol - CHECK. Depression - CHECK. Fibro (Lyrica) - CHECK. Joint/Muscle pain - CHECK (muscle relaxer). IBS - CHECK. All these things treating symptoms. It was even good to hear that doctors don't know what to do with you. I'm with a "specialist", but the last time I went in, and sitting there with tears, he said he didn't know what more to do for me, and then suggested finding a support group.

Now, where do I go from here?

 

[Lou38]

Welcome to the forum DJScott. You're in the right place here, there's a great bunch of people on here. I know what you mean about not knowing where to go next. It's so frustrating! I've seen so many people from orthopaedic consultants to rheumatologists, GP's, Physiotherapists, podiatrists, Clinical physiologists, anaesthetists in the pain clinic, I can't even remember the rest! I'm on more meds than ever, Gabapentin, Amitriptyline, cholecalciferol, meloxicam, codipar. I'm a walking medical dictionary too with fibro, osteoarthritis, osteoporosis, hypermobility, scoliosis, IBS, RLS, neuropathic pain, migraines, raynauds, vitamin D deficiency, bruxism, I'm being investigated for sleep apnoea just now & that's all that I can remember. Anyways with all of that going on, the only treatment plan I have just now is to take all of the above meds which like you say simply treat the symptoms. I hope you find the forum as helpful as I have, I've had some really good advice & there's always someone who manages to cheer me up even on a bad day.

 

[DJScott]

So I have a question... I understand that diet (gluten especially) can help somewhat, but it is the FIRST thing that people tell me I should change. These are people who do NOT have fibro. What do I tell them?

 

[Brenda K]

DJScott
My Fibro Dr truly believes that most people with Fibro have intolerances to gluten, the lactose in dairy and fructose. Most Fibro diets encourage fruit whereas mine discourages it. If you have to have it, she says only with your meal at lunch or your meal at supper. Now I am not saying that everyone has these issues, but in her years of studying and treating Fibro, she has come to find that the majority do have issues with these. Most people don't even know it, I didn't realize for the longest time that I had a problem with lactose...but subconsciously I must've because I stopped using most dairy products and noticed a difference. Gluten is on and off for me. I can't go near it when I am in a flare, but when I am doing ok.... well ok for having Fibro, I can tolerate some and not have any issues. It seems the worse the flare, the more sensitive my system is to absolutely everything. Sometimes I go days without eating much of anything just to keep the symptoms at bay.
I do know that Fibro robs you of your Vitamins and minerals. Your body just passes that stuff through instead of absorbing it. My dr tests my blood on a regular basis making sure that all my levels are within her "happy range" lol. She tends to want them a bit higher than normal being that a flare can cause us to stop absorbing the vitamins and minerals that our bodies are so desperately crying out for.
You could always try cutting back on gluten, and just keep a diary to see if it makes a difference.
I'm horrible though. I can't always stick to my diet. For years I comfort ate when my pain was bad. The serotonin would make me feel better temporarily... but it was a viscous cycle. I still fall off my lil red wagon on a fairly regular basis and always at the worst possible times! we are only human right?

 

[DJScott]

I was afraid you were going to say that (gluten is bad)! The thought of doing ANY diet at this point is more than I can handle. I cope with stress by eating, and dieting (or cutting out things I love (carbs), just adds more stress. :-(