First time here, I'm getting pretty desperate

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noramouse
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/19/2015 7:31 PM (GMT -6)   
Hey everyone. This is my first time reaching out to anyone about feeling crappy all the time but I'm beginning to get really desperate. I'm a 32yo female, up until a few years ago I was active and athletic, I've been to every neurologist, sleep therapist, psychologist you name it, they can't get a handle on what is wrong with me. Blood tests for MS, Lupus, diabetes etc all negative, but reading what others with CFS and/or ME are experiencing, I can most definitely relate. I'm currently trying to finish vet school and just had to postpone my enrollment for 6 months because I am not capable of focusing or even getting out of bed most days. My garden is dead and my dogs are fat from lack of exercise. I feel guilty and lazy and frustrated and could really use some advice on how to handle this, right now I just want to curl up and die. The thought of feeling like this forever looms up and I panic. I'm watching my life go by and am incapable of participating.
It has been getting worse for several years now and recently I've realized I have so few "good" days that my natural state is depressed and frustrated and sore and angry at myself and the world. My next doctor's appointment is in a few weeks but I can't seem to stress to them that I cannot lay on the couch for a month at a time waiting to see if the new drug of the month is going to magically kick in and save the day. Has anyone gotten over this? How? Any advice is greatly appreciated and feel free to ask anything at all, I'm an open book. Please throw any advice my way, I really need help.
-noramouse

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 6/20/2015 1:39 PM (GMT -6)   
noramouse, I am so sorry for what you are dealing with. The only suggestion I can give is to really look at your diet and exertion. Are you eating sugars, refined foods, etc.? Sometimes gluten can exasperate the symptoms. It is very important that you eat only good foods. Pay very close attention to how you feel after you eat, did it stay the same or get worse, you might be able to identify some foods that are harming you? It is a weird phenomenon, but the more foods I cut out, the more I can identify that are causing me grief. I think my body is becoming sensitive to different foods as time goes on. The first one that I discovered that was making me sicker was chocolate. For some reason my body started to react to chocolate as if it was toxic. I could not believe how much better I felt when I stopped eating it. From there I was able to start identifying others.

Also rest is so important. I know it feels lazy but our bodies really can't deal with exertion. I spend much more of my life sitting than I did pre-CFS. We have this thing called Post Exertion Malaise. It would help you if you researched this. Check out this website, it might help. http://solvecfs.org/

We tend to be deficient of Vit D and some of the B's, a good multivitamin might help.

If you go to the medical Dr.'s they will put you on medication. If that is the rout you want to go, hopefully it will work for you. In many cases people choose this because of the desperation but it ends up making them worse in the long run.

If you don't know much about natural healing, perhaps you might want to try a Nateropath?

It has taken me a long time but I have improved to the point where I was able to go back to work full time. I am still not well and have to watch everything, diet, exercise, stress, etc. and am still not able to do most of what I used to. For instance my husband and kids went fishing today and I had to stay home because I didn't know how I would feel or if I could keep up with them. And now, half way through the day, I am glad I stayed home. But it totally sucks not to be able to "live", so I absolutely know how you feel.

Hope this helped a little.....

noramouse
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/20/2015 7:32 PM (GMT -6)   
Thank you so much for your response. I'm at the "desperation" stage now and am so frustrated I could scream. I've been really careful with what I eat and pretty much eat straight fruits, veggies, and meat my brother hunts (venison, game-birds, all lean). I've had food allergies forever so that was the first thing I did. no sugars, very few carbs...this is kind of shallow, but a lot of the depression is the weight I've gained from not being able to run, swim, bike etc. I shouldn't be overweight for the calories I consume, the stress is just so overwhelming! Nothing fits anymore and I don't recognize my own body. It's confusing and just plain sucks! I am vit D deficient and am taking a supplement but otherwise my tests come back healthy as a horse. I'll look up post-exertion malaise, I'm pretty sure I overdo it when I feel alright, I feel like I have to make up for lost time. Last time I went running it put me down for almost a week. Slowing down is going to be the hardest thing I've done in my life, I've always run a little on the hyperactive gung-ho side. It kills me not to be able to keep up.
I'll look into what you said and thank you for being there. I wouldn't wish this on anyone but it is nice to know I'm not completely crazy or just a couch-potato.
<3
"Your heart felt good, it was dripping pitch and made of wood. Your hands and knees, felt cold and wet on the grass to me. And that's how the world began."

sweetpeaisme
Regular Member


Date Joined Feb 2015
Total Posts : 498
   Posted 6/20/2015 9:23 PM (GMT -6)   
@Noramouse...for MANY years my MD kept telling me that it's all about my diet-she even blamed food intolerance for my low-thyroid, Peri-menopause, headaches and tummy pain, allergies, AND heart Palps...but as years went by I became more & more ill. A cardiologist ruled out heart disease, an allergist said "No allergies", the thyroid meds did not solve the problem and neither did eating organic, gluten free, dairy free, preservatives free, & removing other various food intolerance...

So, FINALLY after listening to my sister who's been ill the same amt of years as myself and just about the same symtoms; she was diagnosed w/Lyme disease in '08', but I didn't listen to her advice all because my MD said chronic Lyme doesn't exist- oh my MD tested me for Lyme in 2010,which revealed an 'indeterminate'= UN able to determine positive OR negative...

So I switched to a Lyme literate Dr. last summer; she ran a wide range viral and bacterial panel that revealed chronic infections. Your typical MD, or family Dr. Will not run this test EVEN PER YOUR REQUEST-I know cause I've insisted ONLY to be told such horrible things such as, "You need to stop reading online", "Just because your sister has Lyme doesn't mean you do", and "here just take this sample antidepressant"!!! My MD saw in my file that I'd had past allergic reactions to antidepressants and she said, "So you won't even try it"? I said, "NOPE" not unless you can PROVE I have a serotonin deficiency!!!She wouldn't treat me for LYME infection w/out a cdc approved positive Lyme test but she'd give me a prescription for a chemical that messes w/your brain chemicals.....go figure-she'd give me big pharmaceutical drugs to mask my symptoms but wouldn't spend a single minute investigation into WHAT ails me to treat the cause!

I've been getting treatments that zap the CAUSE of CFS, which isn't CFS at all, but is M.S.I.D.'s=

Multiple Systemic Infectious Disease

sweetpeaisme
Regular Member


Date Joined Feb 2015
Total Posts : 498
   Posted 6/20/2015 9:34 PM (GMT -6)   
Please get an Igenix Lyme test=especially since the scientists now KNOW that the disease can be transmitted from insects on domestic animals...for example they've found the Lyme bacteria in ticks, fleas, AND mites from dogs and cats! People with Lyme also have many other bacterial, viral, AND parasitical infections!!!

Also, get tested for reactivation of viruses in the herpes family-to name a few:
The childhood virus known as rosiola is HHV6(human herpes virus 6)
EBV(a herpes virus)=the virus that causes mono(if you had it as a young girl, it can reactivate)
The cytomegalovirus=also a human herpes virus

My ND also tested me for Mycoplasma and chlamydophilia pneumoniae(not the STD)

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 6/21/2015 4:34 AM (GMT -6)   
Noramouse, welcome to the forum, sorry for the reason though. I have had CFS/ME for 10 years & fully understand the feelings & emotions you are going through. I went through them all too. It is important to get a dx no matter what it is you have because that is the beginning of closure for the grief process you are going through. We all have had to grieve our old lives & the things we have had to give up. Dealing with an illness takes us to a whole new place & we have to learn a whole new way of dealing. The first thing you need to do is get rid of the guilt & feelings of laziness, Sweetie, you have an illness, one you did not ask for so it is not your fault. No matter what you have, these feeling will only make you sicker. With CFS/ME it will send you into a crash that will make you sicker & more fatigued because emotional stress is just as harmful as physical stress. In everything that you do you must pace yourself, you will hear about pacing a lot from the CFS/ME community. It is the need to balance any activity with rest & not to overdo.

Sounds like you have been very proactive with trying to find out what is happening with your body but just keep at it. To find out if you have CFS/ME you will need to eliminate all other possibilities. It is sad that there is no test as yet to check for this illness, so getting rid of all other possibilities is imperative. If you are found to have EBV or HHV6 or some such virus you can still have CFS/ME because these can trigger you to have it also. I don't have a viral load so have never had to deal with it but if you do I can only speculate that you will feel better by dealing with them. This won't make your CFS/ME better, but you will feel better because anything like this can trigger a crash & so make you sicker. Deal with each thing separately & do not stress over them.

I went through an elimination diet when I was first dx'd because I couldn't afford the testing, we started me off with oatmeal & got rid of everything else. Every 2 weeks I added something for 2 weeks. This took me forever but I did feel better until I added soy. There it was, I did not have an allergy to it but a sensitivity that made me really sick. I got rid of the soy in my diet for about 3 years & every so often tested myself, after about 3 years I found I did not react to it anymore. My daughter had a full blown allergy to eggs. She was so sensitive that we had to be careful even in the grocery store to wash off the handles of the cart that we used because if someone had used it for eggs she would react terribly & could be sick for days. We couldn't even have mayonnaise in the house or anything with egg in it. After about 4 years we introduced quail eggs to her & she was all right, to make a long story short she can now eat eggs of all kinds. Make life easier as my granddaughter was tested & has allergies to wheat, milk, pork & bananas, (sigh!!!). I did gain weight at first because I live such a sedentary life now but was able to lose 35LBs with the low carb diet. I loved the food so it was not hard for me & yes, it made me feel so much better about myself. I gained about 10lbs again & was able to take it off with the diet again.

As far as the depression, I take an anti depressant because my brain does not make seretonin, my whole family is the same way but I believe if you need it, take it. It doesn't have to be long term & it can help you through a bad time. But definitely a personal choice. Well, didn't mean to write a book just wanted to say hello. Keep us posted as to how you are doing & what you are trying, I love to hear how others are coping & feeling better, it is encouraging. Many soft hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 875
   Posted 6/21/2015 9:01 AM (GMT -6)   
Sad story but know life can get better.
You have one to a number of doctors and it doesn't sound like the have been helpful.
Just my opinion but you need to see an md who looks for things others simply don't. There is always a cause or causes-just need to find e
I would look for a doc who has experience in the following
Food allergies
environmental toxins
parasites
hidden dental infections
nutritional issues
There docs in the world who look for causes-find one and you may find your cure

Post Edited (magoo2) : 6/21/2015 2:33:58 PM (GMT-6)


3Shadows
Regular Member


Date Joined Apr 2014
Total Posts : 125
   Posted 6/21/2015 1:30 PM (GMT -6)   
Not my original post but I read them any way. Thank you jewelrylady for your encouraging words to the Noramouse. Though I have in the past been diagnosed with fibromyalgia; these posts made me consider more for some of todays and this weeks symptoms. I would add myself that I have been tested and have several food sensitivities that do effect my mood and energy. It can take me days to feel better after ingesting them.
anxiety, depression, PTSD, Past medicine phobia
Escitalopram 10 Mgs., Clonazopram .3150 2x's a day; am and pm

noramouse
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/21/2015 8:59 PM (GMT -6)   
Wow, LOTS to think about and research and trow at my doctors! I think a large part of my problem is just being a pushover and not asserting myself with the doctors I've been to. I'm studying medicine for crissake, I've made the connections to EBV and lyme's in my head, just never pushed hard enough to get anything done about it. Every doctor I've been to is seriously threatened when you bring any information out that wasn't on their agenda, and every time I change doctors I feel like you have to start at square one AGAIN with the "do you feel depressed?" and "Have you tried meditation/diet/prozac/whatever?"

sweetpeaisme- you definitely hit a chord there, I had mono and flair-ups from mono for years as a kid. I know when I get really really out of it it feels like my organs are tender. I've thought for years it was an immune problem because of the myriad other immune response problems I have (psoriasis, food allergies, random one-time immune responses to crazy things that never happen again...I had an allergic reaction to a banana. Once. Never happenned again. What?!) Getting tested for latent infections is difficult but I think I'm going to make the trip to LA to see an infectious disease specialist.

This is all so good to hear you guys. I really really push against the CFS diagnosis mainly because my brain refuses to accept that I have to go slow from here on out. I've already postponed my admission to the vet program so I'm going to take this time and really grind through the physical possibilities and eliminate everything before selling my bikes and running shoes.

jewelrylady- I've done an elimination diet before but that was years ago, I think I'm going to try it again and keep a more rigorous journal this time. I flaked and cheated a little before because school and work just didn't align with it easily. I think a break from both is essential to nailing this monkey down.

Thank you thank you thank you. I'm a stubborn ass for not finding support sooner. It makes it more difficult to ignore and make excuses for my "bad" days. Hopefully this is the kick I needed to stop wallowing in depression and get back to being proactive about it. It's so easy to just give up and feel sorry for myself, I don't know how all of you even have the energy to expend helping me too!
"Your heart felt good, it was dripping pitch and made of wood. Your hands and knees, felt cold and wet on the grass to me. And that's how the world began."

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 875
   Posted 6/23/2015 4:36 AM (GMT -6)   
just my opinion. I wouldnt throw anything new at my doctor-I would get a new doctor one that has a history of success with this type of issue.

Post Edited (magoo2) : 6/29/2015 5:21:26 AM (GMT-6)


healerme
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/23/2015 5:05 PM (GMT -6)   
Hi
I've had chronic fatigue and now I am helping my 7 year old son to recover from it. It is possible to get better. I believe that illness is often related to disconnecting with parts of ourselves. As we become more and more disconnected we lose all our life-force somehow until we get to the point when we feel a bit like an empty shell. I've created something called the 12 Body Areas to help people reconnect with missing parts of themselves. it might sound a bit weird but I'm not into the weird. I'm into simple down to earth healing. I've made a video to help people and you can find it on my blog (see link below) You'll find it in Healing Insights (Videos) on the categories.
http://healers-story.com

Inspirational, insightful but most of all real!

sweetpeaisme
Regular Member


Date Joined Feb 2015
Total Posts : 498
   Posted 6/25/2015 12:46 AM (GMT -6)   
Illness is caused by either bacteria, virus, parasites, fungus, molds, environmental and/or heavy metals...in other words 'pathogens'-its scientifically proven

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 875
   Posted 6/28/2015 4:13 PM (GMT -6)   
Sweetpeaisme- sometimes its all of them together
Where in the body would one usually find bacteria, virus, parasites,fungus, molds and heavy metals?

babs64
New Member


Date Joined Jul 2015
Total Posts : 7
   Posted 7/15/2015 7:56 PM (GMT -6)   
noramouse said...
Hey everyone. This is my first time reaching out to anyone about feeling crappy all the time but I'm beginning to get really desperate. I'm a 32yo female, up until a few years ago I was active and athletic, I've been to every neurologist, sleep therapist, psychologist you name it, they can't get a handle on what is wrong with me. Blood tests for MS, Lupus, diabetes etc all negative, but reading what others with CFS and/or ME are experiencing, I can most definitely relate. I'm currently trying to finish vet school and just had to postpone my enrollment for 6 months because I am not capable of focusing or even getting out of bed most days. My garden is dead and my dogs are fat from lack of exercise. I feel guilty and lazy and frustrated and could really use some advice on how to handle this, right now I just want to curl up and die. The thought of feeling like this forever looms up and I panic. I'm watching my life go by and am incapable of participating.
It has been getting worse for several years now and recently I've realized I have so few "good" days that my natural state is depressed and frustrated and sore and angry at myself and the world. My next doctor's appointment is in a few weeks but I can't seem to stress to them that I cannot lay on the couch for a month at a time waiting to see if the new drug of the month is going to magically kick in and save the day. Has anyone gotten over this? How? Any advice is greatly appreciated and feel free to ask anything at all, I'm an open book. Please throw any advice my way, I really need help.
-noramouse


noramouse, First, I want you to know, I was right where you are. It's 6 years later now. I do see the light and the end of the, tunnel. It took me all this time to figure all this out. First, you get the blood work done for, EBV. get the results. if thats not it..get the lyme disease one. But, from my own experience and a whole lot of, rude, insensitive doctors, etc. I finally found my, angel in the form of a, PA. Physicians assistant. She listened. that was number one. She did the blood work for, mono, it was positive. No cure, its a virus. There is no cure for a virus. They have antiviral meds but they don't treat mono with it. It can make it worse. Except the fact, you are going to be laid up for awhile. You are going to be so tired you can't stand it. Look up the list of thngs you can feel. most likely you will have, MOST OF THEM. First, treat the symptoms. If you are diagnosed and there is no cure you have to do something. So, have your doctor or find a doctor that will treat the symptoms. (keep in mind if it is, mono, CFS, or Fibromyalgia you can wake up one day it could all be gone. Odds are it won't, but it could) So, have them give you something for the, exhaustion aka extreme tired and sleep doesn't help. If you're having muscle pain, back pain, leg pain, etc..have them treat the pain. So, if sleep doesn't come easy for you, or doesn't come at all, ask for sleep meds. My doctor gives me, amphetamines for no energy, and pain meds for pain...we have them all three fine tuned. So, I could get about the business of trying to get well. Its not going to come easy. But, at least with the meds you have half a chance. 1st thing I did was start going to a, Chiropractor. Thats an awesome help for my back and legs. Then, no, wheat, no sugar, no dairy, nothing that could cause anymore inflamation than you already have. I take raw supplements. meaning they are real, they aren't synthetic get them at a health food store. and take it from there. stay with organic..walk if you can...get at least 20 minutes of sunlight on your body, without sunglasses, everyday if you can. Take good, B12, D3, magnesium. raw. And drink a ton of filtered water..no chemicals in your water. lots of water, push all that stuff through you. Its not easy, its not quick. But, I couldn't do any of it till I got all the symptoms under control. and pray.

razinsosick
Regular Member


Date Joined Aug 2014
Total Posts : 59
   Posted 7/29/2015 7:50 AM (GMT -6)   
Hello fellow sufferers
here I'm with a broken heart and tears in eyes and with my sense lost i dont even know where to post this all i know is that i want this misery to stop permanently so i can live life again like i did always before all these started 2years ago and I've been suffering ever since. What i can say I've been sick for 2 years i say There are good times and bad times as well but i just never felt right different parts of my body aint working right and i am not in right sense its been 2years i posted in different online groups forums and been to doctors too but as i said it just doesnt stop. Ok lets say what i have. Its endless. Eyes pain feeling sleepy heavy head Theres something in my head i dont feel right to head . Headache off and on . At times my headache is at its worst my temperature goes up red itchy eyes burning sensations . It varies depending on weather. Weather is everything in my life its a very great factor. My symptoms changes as weather changes i feel much better on hot sunny days than rainy damp days although nothing is Perfect but relatively hot sunny days are better my skin itches i sneeze a lot i have asthma . Asthma is getting worse sometimes . My stomach is completely messed up . Diarrhea/constipation for 2years . Different parts of my stomach /abdomen hurt . I feel bad/good before/after eating. I go crazy when i have empty bowel i have panic attack from the stomach gases i burp/fart and do all sort of thing i have pain when urinating . I have dark urine on an empty stomach or on hot days i have muscle twitching jerking pains and a lot more and one thing medicines dont work good on me . I dont know what to do or what else to say. I was much stronger before . Now i have all sort of troubles and anxiety i even freak out on Hiv /cancer and so on i was doing good this year in some months but again collapsed . I live in Bangladesh anyway its a crapty country anyway.
well well u know what I've never felt well a bit the environment seems to be against me all the time. I take no medication at all
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