Hello there and welcome aboard DS. I'm sorry that you are suffering and struggling with a diagnosis. Hold strong and know that we are here for you to give support and comfort. You are not alone. Hugs and hope for healing.

I am so sorry. I understand exactly what u are going thru. I saw a chronic fatigue specialist in Denver for a year. I received Meyers Cocktail IVs and was put on a strict diet of mostly fresh veggies and meat. I did help a lot. I also took a lot of supplements. I was housebound / bed and recliner bound for a year. I can now work part time and get out of the house most days. I have walked a 5K since the diagnosis of cfs and RA. It is horrifying and awful in the beginning. The best thing I did was get on a good diet. It does not cure but it does help the body. I also take a lot of Vit B and calcium / magnisium / zinc. I still have really bad days... but that's ok. I now can at least have a life. Hugs and there is hope.
Ginger

I’m glad you found a safe place for support. This group is a great place for being heard without judgment. Medical tests with no clear answers can be so frustrating! I remember being so disappointed in negative results on tests, which sounds crazy! At least I would have had a clear idea of what was going on rather than a lack of answers and no symptom relief. I have had the nerve conduction tests and MRIs also. And every blood test invented. Haha. One thing I figured out for myself after about 8 years of severe limitations is I’m very triggered by warmer or cooler temperatures. Even slight changes. Maybe you could see if you could find an optimal temperature that works for you, and then see if symptoms are triggered by a change in the temperature. I still have a lot of issues, but at least I can lessen some things by controlling my environment.

Thank you all SO very much for taking the time to reply and letting me know I’m not alone in this. When test after test comes back negative, you start to second guess yourself. Reading stories here let’s me know there is something wrong with no and to not give up. Thank again so very much for your advice and kind responses. XO

Just a word about a CFS diagnosis. It sounds like you might be getting close actually, since at the moment it is still a diagnosis by default. By that, I mean that if your tests rule out all other causes, then they can say it is CFS. There is a blood test in development which the scientists working on it say can detect the disease directly, but that won't be available for a few more years yet.

It is a very frustrating situation, I know, and compounded by the fact that many doctors still don't believe the disease actually exists. Be prepared to be told that it's all in your head or that if you just push through it, you'll be fine at at least one point in your journey if it turns out you do have CFS.

Have you spoken to your PCP yet about the possibility of CFS? That would be my first step. What reaction you get will indicate whether they are the right person to deal with this condition. Also, where you live could help or hinder whether there is a specialist in your area. We have people from all over the world on this site (I'm in Australia), so asking if anyone knows of a specialist in your area might be helpful

I hope you get some progress soon.

Hi Isis, welcome to the group.

Since you asked for advice I thought of what I would have most wanted to know when I first got ill.

First - about pacing. Taking breaks is so important and usually the more tired I am the harder it is to take one and rest so I take them often to try and avoid getting to that point. Take care of yourself and just do what you can, don't push yourself extra hard to make up for the missing energy.

Second - you mentioned second guessing about the diagnosis and for me this was a big problem. I was unsure if I was ill and looking back was probably in denial about it too. If you are ill it's okay.

Cmiat and MHX, thank you both so very much. You both brought up some things that make me feel SO much better. Being closer to a diagnosis would definitely be somewhat of a relief, as at least I would have answers and an explanation of what was wrong. And I’m absolutely still dealing with the guilt of not being as productive as I once was. However, I do notice a difference when I don’t push myself, so I’m slowly letting go of the guilt. Thank you both SO very much for responding to me!! XO

Hi, Isislola. I hope you are having a relatively good day today. And maybe getting a good book/movie list, if you have the energy for that.

have had CFS for about 22 years, but only diagnosed since January. I got tired of fixing symptoms and finally saw 'Unrest', a documentary that featured a doctor who had done research on CFS in FL. I live in NC, and found the Hunter Hopkins Center in Charlotte, who know this syndrome well. I am slooooooowly coming out of a deep hole I got myself into, and I hope you can find a doctor near you who gets this stuff. Here's a link to some medical people who supposedly understand CFS and can confirm or deny that you have it: http://fmscommunity.org/findingadoctor.htm

Personally, I avoid chiropractors and the like. This syndrome affects me on the cellular level, parasympathetic and nervous system level, immune system level...so much science is involves that I thought it best to find a trained doctor who has studied this for the most edfective treatment. Med schools don't teach about this, so finding a good doc can be tough. I hope you find one!

In the meantime, good luck fighting the guilt and ideas of needing to be productive!!! It's a real head game, and tough to change. I hope you xan give yourself lots of compassion, and let the ideas of what you should be doing change. For me that's the toughest part.

I wish you well and hope that you find compassionate people, a good doctor, and some light at the end of your tunnel. Even if it's teeny at this point. Getting better happens! Here's a hug and a prayer for you.

Hi, has your doctor run antibody tests to see if you have had the viruses that are know to have occurred in people with CFS/ME? My specialist did and I found out I had Epstein-Barr Virus, multiple herpes viruses, walking pneumonia etc. that I was never diagnosed with having. The list is crazy long, but after doing my research multiple viruses that I have been infected with are associated with CFS/ME. I am sorry you are feeling so bad. Listen to your body, get the rest you need and keep being a strong advocate and if necessary bring someone with you to your doctor's appointments to help advocate for you as well. It gets difficult when you feel so bad to advocate for yourself. Many hugs.

Hi
This IS a very mysterious and profound illness. I imagine that your doctor has tested for Lyme and other tick borne illnesses. The frustrating thing (to me) about this and other diseases/ syndromes is that doctors often give up when they can't find a specific diagnosis. A lot of we need to do (as people have mentioned above) is maximize our quality of life by managing our symptoms.
Don't give up hope.....I have had this disease for decades but have had periods of time where I have felt pretty good. You will get there. I would get a good natural multivitamin. Like so many of us with CFS and FM, depression can set in. But it's important to know that people with chronic pain/ illnesses often suffer from depression as well, but NOT vice versa (i.e., people who are depressed do not usually have FM and chronic fatigue syndrome.). I have just joined this group--I have been on DS for a long time and belong to the fibromyalgia group as well. I believe that with CFS there is a real emotional and even spiritual component as our entire lives are turned upside down and yet we get so little validation from friends, families and especially the medical community.

LLH, BooPainter and jannytheresa, my apologies for the delay in my response but THANK YOU so very much for your sweet and helpful posts. Just this morning I got confirmation from my PCP that indeed I do have CFS. However, he is referring me to a neurologist.... is this normal? From my medical background I would assume this is autoimmune and thus, a rheumatologist referral would make more sense.... but I am still in the learning stages of what CFS is. I will definitely be following the links LLH shared to make sure I’m getting the best treatment for this. I struggle daily with the feelings of guilt over not being productive, and I think that’s a huge part of the depression that jannytheresa states comes AFTER you have been struggling with the symptoms and been wondering “What the HELL is going on with me?!???” without real answers for too long. I’m also finding it hard to explain to well meaning friends or family members who say, “I get tired and have aches and pains too but I just push through it.”

First, I'm sorry you are dealing with CFS. I wouldn't wish this on anyone. :( Second, you have gotten a lot of good advice here on pacing and facts about CFS. It really is a multi system dysfunction and so I'm not surprised that your doctor has referred you to a neurologist since some doctors think it is a neuro disorder. I went to an infectious Disease Specialist as he was the top CFS guru in my area, but he said the lymbic system in the brain (which controls several body systems) is what is causing the health dysfunction. Another Doctor refers to CFS as when our body's breaker switch has blown. We need to figure out a way to flip the breaker back on to get the body working successfully like it was designed to to. That is why our bodies don't function like everyone else's and we can't recharge our batteries at night like everyone else can. We have a break in the circuitry of our bodies and until it gets fixed and back online we will deal with mulit-system dysfunctions. There are many theories and protocols out there to help with this, but it doesn't seem to be a one size fits all and works for every CFS/ME sufferer. There is still so much research to be done to understand and find out how to help our bodies heal from the damage it has received. I'd just encourage to keep doing research and read up on it and don't be afraid to find supplements to find what works for you. It is different for everyone but some of the most popular ones I hear about are: Vitamin D, all B Vitamins, vitamin C, strong probiotics supplement, MSM, D-Ribose, CoQ10, Black Walnut capsules, anti-fungal supplements, anti-parasite supplements, thryoid medicines if needed, hormone meds if needed, raw food mulitvitamins, melatonin, sleep meds if needed, antidepressants (dr's love to prescribe this for us CFS sufferers), diets low in carbohydrates & added sugars & additives/preservatives & processed foods, etc. As to what your friend/family members say for the "just push through it" reply that it would only make your body worse to just push through it and you have to listen to your body and pay attention to what it says your tolerance is (and even on good days pace yourself since it is so easy to go over the energy cliff & pay for it for days/weeks) and just say that your body's thrown a fuse/flipped the breaker and your battery is broken and doesn't perform like it used to. Hang in there and know we are here to support you. :)

Hello Isislola and welcome to this site. I'm sorry to hear you're struggling with
so many symptoms.
I would ask my doctor for a referral. Specialists are not easy to come by. If it were me, I'd be curious to know who if anybody he might have in mind.
I got my diagnosis from a naturopathic doctor who worked in the
same office as an MD. Some doctors have both degrees. In my experience, they are the ones who have dealt with this illness and know which tests to run and what to look for. Also, I would ask on here for referrals in your area. Unfortunately, many of these folks do not take
insurance, yet they have the experience to test and diagnose. Good
luck with all of this. It's not your fault that you feel this way. Try not to
focus too much on other peoples' comments although it might be
difficult. That's my short advice for now and keep us updated if you would.

I have been having acupuncture and bowen therapy and it is helping. Slowly, but helping.

My specialist is an infectious disease specialist and the latest info he said is that it is appearing the mitochondria (energy) of the cells aren't working properly whether caused by genetic or infection they do not know yet. That is why after doing too much (and this varies with each person what too much is) the body is not able to recover quickly. What I will say do your research before you go see any doctor and don't take their word as law because most don't know or haven't taken the time to understand this disease. And if they recommend PET progressive exercise therapy...run quickly out of their office. This is old information and it has been proven to be very harmful for patients with CFS/ME. CDC has finally taken that recommendation out of their guidelines.