New to the forum?

Sign Up Here!

Already a member?
Please login below.

Forgot your password?
Need Help?  
Keep me in your thoughts and prayers
11 Replies
Cher0208 - August 4

Hi all,

Hope everyone is doing well. I am going to see a Fibromyalgia specialist tomorrow. Please keep me in your thoughts and prayers. I am hoping that she will be the one to finally give me some answers and solutions. My symptoms are so aggravating. Lately, I have been thinking how wrong it is that the one thing that gives me comfort when I am in so much pain, so tired and tormented by all of my symptoms is that one day...when I pass away (hopefully at an old age) I won't feel this pain anymore, that my body won't ache, that my vision and hearing won't bother me, that I won't feel constant numbness and tingling in my body. I am terrified at the mere thought of death. But those actually comforts me. And that is sad.

I had hoped for so long that this would fade away to something of the past. Something that I could look back on, like so many other bad memories, and think - I am glad that is over and I no longer suffer from that. It's been well over a year since this nightmare began and I am gradually accepting that all those things that I read were true. That this doesn't go away, it is managed if you are lucky. My body feels broken and defected. And I am tired of trying to eat like a monk, and meditate like a yogi just to continue feeling exhausted and miserable.

I pray this doctor will help me regain my quality of life. And you all know that I will pass on anything that helps me.



kvc33 - August 4

Dear Cher, I hear your desperation and I understand only too well. I have been living this nightmare for 17 years and I too think that death will be welcome. The book called "Recovery from CFS - 50 personal stories" gave me hope. It is about real people who were very ill who recovered. I suggest you read it. Most of them were ill for many years. I am getting a test done on my adrenal function, hormones and neurotransmitters. I think that it will finally give me some answers. Our brain chemistry is a big part of our pain, no brain, no pain. Please google integrative psychiatry and read about the tests they do for fibromyalgia. I suggest that you don't expect quick fixes but slow improvements instead. That is the only way to handle this disease. When I get really bad I think about the days when I WAS able to get out and do things in the recent past. Those days will return and there is always someone who is worse off than I am. God Bless you.


January - August 5

HI Cher! Been wondering where you went and how you were doing. You sound like you were kind of down when you wrote this. I hope you're doing better.

I think sometimes part of this disease is coming to terms with it in your head… we all go through that period of run-around with the doctors, and trying different meds with horrible side effects, and then we start trying to fix ourselves. Being pro-active is good, and I think works pretty well in the long run. You have to find what helps you. The real bummer is you are probably never going to feel like you used to. I still struggle with accepting that too - I don't wanna! It's been decades for me, but I really do believe if I keep trying I am going to fix it. And I AM so much better than I was. But I still get the flare-ups, and when I do…. well, it's hard to remember that it will pass. I just have to remind myself to take care of myself. (And try to figure out what caused the flare!) This community has got so much great information - as people come together and post their ideas and "experiments" it helps us all! And we all get really down sometimes - it's part of the disease.

You are not broken or defective, Cher! Everybody has (or will have) some burden to bear whether you see it or not. It's how you bear the burden that defines what kind of person you are. From the posts you've put on here before, I know you have strength and kindness - and persistence. You will be OK. Please let us know how it turns out with the new doctor. Wishing you the best and much luck. Hugs.


Cher0208 - August 5

Thank you guys so much for your kind words! I was definitely feeling down when I wrote that. I am feeling much better after seeing the doctor. She spent well over an hour with me, looking over all of the medical records that I brought in and asking questions. She seems to think that the two abnormal thyroid tests that I took a while back was not just a fluke. My tests after that were normal. She told me that she see's this all the time. I have to go to a lab and get tested for T3, T3 reverse, T4 and TSH 3rd generation. I will go on the fifteenth day after my next period when my hormones are at their peak and they will test me then. She said I have to go before 10 am. The doctor was shocked that I had been tested for so many things so many times and that noone was treating me in any way. Other than antidepressants and Savella, no other doctor did offer treatment. I have been treating myself with supplements and diet. She asked about my sleep, where my pain is, if I get frequent infections (yeast) or upper respitory etc. She told me to follow up with the rheumatologist that I saw. They told me to go back in 6 months and I never did so I will make an appt. with that doctor. I had protein in my urine in the winter and was supposed to go back in 3 months to see the nephrologist and never did. She told me to do that as well. She asked me to stop all supplements and gave me 2 injections in my hiney. Magnesium, which stung a lot! And another for energy that contained NADH, Glutathione, Hydroxycobalamin and Na bicarb. I will be getting those once a week until I see her again for the results from the lab. The lab will also test me for the following; DHEA sulfate, Ferritin, Hemoglobin A1C, Homocysteine Cardio, Insulin serum, Pregnenolone LC/MS/MS, Iron and iron bonding cap, Vitamin D and C4 level. I included all of those because I know January likes to look these things up. I have yet to myself but I will. She checked the pressure points for pain that some consider necessary for you to have in order to have the diagnosis of Fibromyalgia. I had one out of all of them but she told me that you don't have to have all the trigger points. She believes this is Fibro, but she explained that some people just have Fibro, although many have Fibro accompanied with other deseases such as Lupus. So it is important for me to follow up with those other doctors. She gave me a webiste called Natural Dispensary and told me 4 supplements to get. One is for pain, one is for sleep and 2 are for energy. (End Fatigue pain formula, End Fatigue Revitalizing Sleep formula,Ribose and NADH) I will let you know when I get those if they are amazing or what. You have to sign into the site with a special pin # the dr. gave me. Hoping we will look into food sensitivites as well in the near future. I'm convinced I have a few of those.

This will certainly take some time. After all, time is all I have. She doesn't take insurance and I had to put my first visit on a credit card. It totaled $350 (with the injections). This will undoubtedly cost a couple grand over a short period of time. Thank God I have good credit but money is so tight I am wondering how I will even pay the minimum on that. It was a difficult decision to make to go see her. I do not want to worry about money more than I already do. However, my quality of life is very low and as my boyfriend put it- What's the point of having all that credit if you won't use it to do whatever it takes to get yourself better. Who cares if you owe money? Get your priorities straight and go see the one doctor that may actually help you.

Thank you again for your support. I am truly grateful for this forum! I will keep you posted on my appointments, tests, diagnosis and treatments. This journey with a Fibromyalgia Specialist should be interesting.

xoxo Cher


January - August 6

Hi Cher - glad you're hanging in! The dr. sounds like she has read up on, or follows, Dr. Jacob Teitelbaum. End Fatigue is, I think, his site. Be sure you DO stay off your do-it-yourself supplements and just follow what she tells you so you don't get interactions! Shots are good if your gut is inflamed and you can't absorb nutrients properly.

Kinda funny - in a weird way - are you taking antidepressants? I ask because you sounded so depressed! That's what they did for ME in the long run, make me WAY more depressed than I had been initially, but I was too zombied out to notice that. I had horrible side effects that the dr. just ignored. But that was ME. Now I take SAM-e and B vitamins and other stuff.

I'm glad you found someone who seems to know what they are doing with fibro, and of course, she's right, other diseases can certainly co-exist. (Thanks to YOU, we learned all about porphyria!)

I'm feeling crummy with the heat and humidity so won't be looking up ALL your tests this time, sorry. Looks like this doc is carefully testing your thyroid. A lot of regular thyroid tests don't diagnose people very well - sometimes the tests come back fine, the thyroid hormones are in the blood, but they aren't getting into the tissues.

About the tests I do know about, in a short version - she's checking various hormone levels, vitamins and inflammation. (I take DHEA and I think it helps my energy level) but you have to be very careful with it and only take a little - best with a dr's supervision. And she's checking you for anemia and blood sugar levels (high or low is bad). Don't know what a C4 tests for….? I'm sure she'll be looking at more complicated things too like ratios.

Dr. Jacob Teitelbaum wrote one of the first comprehensive books on fibromyalgia. He has it himself, so I think it gives him credibility. (Still -- we are all different.) I got one of the earlier editions of his book, and reading that was what got me going on getting healthier. He has a lot in there about adrenal fatigue - I think where the DHEA comes in. Pikespeak is reading his newer book and I think has tried some of his supplements out - you might want to read her posts on them. Just put her tag into the blue box on the right and hit search.

So glad you are feeling more hopeful! When you get down like that, you just have to ride it through - I'm glad you came on and said how you felt so we could be here for you. (One of my next projects is to read up on kvc's suggestion about googling interactive psychiatry.) Sigh… just think, in a few more years, we'll all have our MDE's (MD equivalents)!


Agavegirl - August 6

Cher - so glad you found a doctor that is actually thorough, is listening to you, and does not tell you that it is "all in your head." Regarding the finances, your health is worth it honey, and listen to your boyfriend because he is right. Take care of yourself to the best of your ability and good things will come. Keep us posted on the lab results.

January - your are so correct about us having our MD equivalents. Most times, I am the one who has the information and basically dictate to the doctor what tests I want and what they need to look for. I have whipped some of my docs into shape and now they ask ME for information, plus I have become actual friends with some of them, so I can "tell it like it is" to them/how they can become better docs. Seriously though, with all the run around from all of these years - before I was "officially" diagnosed in 2008 (after 12 years of being told it was "all in my head" because every test I ever had came back "normal")- I would love to somehow get into some type of medical profession so I can help other FM sufferers. There are too many of us who are suffering and feeling alone. Not to mention all the pill pusher docs out there. I refuse to take the FM meds and always look-up the scripts they write to me before I have them filled. I have spent way too much money on scripts to ultimately after reading the side effects, just simply throw them in the garbage. It is as if they want to create zombies by drugging us up and hope that we will go away so they do not have deal with us. These Rheumatologists are the worst for bedside manner in my opinion. So YES, we all do have our MDE's!


January - August 7

Hi Karen - and welcome to the forum. Before you start Lyrica, you might want to read up on side effects. Google Lyrica and read forums about what other people have said. You can pretty much expect a major weight gain, you have to be carefully tapered up. Some people on here seem to do well with it, other people not. I have lately been hearing better things about Neurontin - which is an older drug - therefore probably cheaper.

You have to be aware of the game that goes on - the newer drugs are going to be pushed hard because the drug companies make huge profits from the patents on them. You are taking a bigger risk using the newer drugs because all the long term data about safety is not yet in. Lots of these drugs wind up as the targets of big lawsuits (that's why they quietly disappear). You may know Paxil is now being litigated.

This is only MY opinion… but I took a lot of different antidepressants and I believe they made my pain worse in general. And, once they quit working, I was REALLY depressed! If you read the side effects literature (which I know is a ton of reading) a lot of them list muscle pain and similar problems. No doctor ever took me OFF any drugs; mostly they are just pushing them these days.

Hope you will read online forums and get some books like Fibromyalgia for Dummies and Jacob Teitelbaum's book From Fatigued to Fantastic. Teitelbaum is an MD who has fibro and chronic fatigue himself. You need to find a good doctor who knows about these conditions and can treat you - and if you are in such unbearable pain that you can't work, apply for disability NOW. Do not wait around hoping to get better - you only have a limited amount of time to apply. You will probably be turned down, once or twice and then you can get a lawyer. OR, you can call one of the disability advocate companies. Fantod, who is on this board, recommends a company called Allsup.

Sorry you feel so miserable, and I really hope you can find some help. You will have to get proactive and learn all you can - you can't just assume the doctors know about fibromyalgia - they are really busy and have to put too much into their heads. If you can go in with your own information and backup, it's helpful. And don't just take the drugs they hand you, do your own research! Get to be best friends with your local PhD pharmacist.


January - August 7

Agavegirl - For now, coming on line and posting what you have learned might help others. But if you're up to it, have you thought about something like social work or counseling? Or, you can pick up a 2-year technical nursing degree - and specialize later. OR, you could consider becoming a life coach. I have heard of programs that run for 6 months to get a certification. Don't know what your ed. background is, but if you already have a degree, you can pick up extra degrees and certifications more quickly. More power to you!


Cher0208 - August 7


January, ever since I was in high school I have had bouts of depression. Anxiety has been present since my very first memories. I am not on any medication now. Other than Savella for a few weeks, I did not accept any other of their offers or suggestions to go on anti depressants. About 6 years back (way before the Fibromyalgia began) I went on Celexa for a year or so. It helped somewhat but I was still depressed on and off. I know, and have always known, that this is not some problem (depression) that I am stuck with, either because of genetics or anything else. If someone is depressed, something is off with their body/brain. I refuse to buy in to this game that the doctors and pharmaceutical companies play in order to get you filling a monthly Rx and putting tons of money in their pocket. How would they benefit if we overcame or even improved depression, FMS or any other health problem without going on their medications? If we heal they lose money, lots of it. These doctors may have started out well in their intentions as medical professionals but then these pharmaceutical companies got involved. They give them free stuff like laptops or vacations depending on how may scripts they write. (My friends’ husband works for a Pfizer) Even what they are taught in school is dictated by these companies and who pays for certain studies. It's disgusting. Our quality of life is a non factor. Their lavish lifestyles are a major factor. So fortunately, this new doctor seems to be on point and I am so ready to be helped by someone who knows about this. Like Agavegirl said, all of these doctors make you feel or want to make you believe this is all in your head. The next time a doctor even mildly suggests that to me I will ask them how it feels to be living in the 60's. It's 2011 and FMS is now recognized as a legitimate disease. I live in New York!! Almost every doctor I have seen is in Manhattan. Someone once told me the best doctors in the world are in NYC. Yeah, I don't think so. Maybe if you have Cancer and need to go to Sloan Kettering or if you need open heart surgery at the Hospital for Special Surgery but certainly NOT if you have FMS and CFS and your life is being sucked out of you in an excruciatingly slow process. Everything is hindsight but I sure wish I would have just gone to see this doctor as soon as I realized I have FMS. The sad thing is I would have done that immediately had I not been more concerned with money.

Rant ended. LoL.
Have a Happy Sunday to all. Now to cook some breakfast!


Pikespeak - August 8

Hi Cher! I am a big believer in the Ribose and have been following Dr. Teitelbaum's protocol. Please read my latest post for more information! I also think the "research" article (18 pgs) found on ColoradoFibromyalgia (dot) com sight may help you to understand where the latest doctor is headed in assessing your needs. January and I have both read it (you can download it). I took a pencil to it, and circled/underlined all the things I wanted to learn more about. That's what helped me to talk authoritatively to my doctor about underlying causes, instead of passively taking the meds to mask the pain. I think you've got a great doctor on your side now--well worth the $$$! Hugs!


Agavegirl - August 8

January - Thank you for the advice. I have Bachelor's Degree in Communications and a minor in Psychology, plus over 15 years of owing my own business. I have been investigating my options for the medical field. Thank you for your encouragement too! I will keep you posted. Hugs to you.

Cher - It is amazing that you live in NY and that you are getting such push back. One would tend to think that the NY doctors would be ahead of things and willing to be experimental. You are so correct about the drug companies and their greed and what would they do if people were not popping their pills all the time? Can you imagine is Cancer, Fibro., other illnesses where cured? The money machine would stop for the drug manufacturers, the hospitals, etc. Hugs to you.

I am very fortunate to live in Arizona, where the famous Integrative Medicine guru, Dr. Andrew Weil is located. He is going to be at his phenomenal "Miraval" soon and will be on-hand to deliver his words of wisdom and to eloquently share all of his knowledge of the anti-inflammatory diet and new research on various pain related illnesses. I will let everyone know what he has to say! I also intend on speaking with his staff on how to enter this field and the best path to be able to help all of us with Fibro.


Nee_ster310 - September 12

Hey Cher,
I would like to share an experience that me and my mom went thru. She had many doctors that shez been with (like every other patient with Fibro)and the same answers with everyone. Now, My mother went to the a new doctor about 4 months ago and the doctor refereed my mom to go and order a product online to try for her fibro. Its an all natural product. He said this product has the highest antioxidants in the world. Its called Kyani. Well, I and my mother tried it at the same time with in the 2ed week I started not feeling the pain. For my mothers fibro it took a month and a half till she really felt the fibromyalgia begin to cease. Within the 3 weeks my mom started sleeping and it has been 14 years since she slept thru the night and now she is snoozing away. I asked the doctor if I can give this info to friends and family and she said its for everyone who would like to order. I call Kyani's customer service at #208-529-9872 #283378 my mom orders online at and give them the docs Distributor #283378 The three product that Dr. Baird let us know about is Nitro Extreme, kyani sunrise and kyani sunset. I just went ahead nd got my own membership #.This stuff truly works and wished that all doctors knew about this. Well, All I can say is try it for yourself. I cant believe that doctors dont know about this. There are thousands of people that needs help and this is what they need.



You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?