I doubt one doctor could address everything but a rheumy could look for RA, FMS. You would need a neuro to evaluate for MS. You are correct about the multiple misdiagnoses. Sometimes the real problem is never really diagnosed. Lyme disease could also cause all of your symptoms as well. MS is a neurological disease. It can cause chronic pain but it does not cause painful or swollen joints.
thank you! your input is truly appreciated. i just need to make sure i am not losing my mind. m
Don't give up hun, I know it feels hopeless and you feel helpless and misunderstood.
I've been dealing with this mess for more than 15 years and last few years I have made progress. At this point I have still not been able to find any specialists for FM anywhere but there is much more awareness now and it has been getting a lot of attention.
My headaches started in 1992 lasting Friday to Sunday and progressed to 24/7 in a matter of months, I thought it was migraines from work stress and family problems (my mother had suffered from migranes). After I collapsed from exhaustion and pain outside my dentists office it was suggest edI might have TMJ -Temporal Mendebular Joint Distress sympton. They prescribed muscle relaxers (very hard on the stomach) and I got a mouth guard. You can look up the symptoms etc. for TMJ on-line.
My point is that this is where it all started. After that came the Chronic Fatigue Symdrome, Candidiasis, diverticulitis and finally the Fibromyalgia and Myofacial Pain Symdrome, not that the others disappeared. I mention all these because more and more it seems they are all tied together somehow.
Most doctors want nothing to do with fibromyalgia patients, and yes the symptoms are very similar to MS but to my knowledge there is still no specific drugs or treatment for fibromyalgia, although I am taking one that helps to calm down the sensitivity of my body enough for me to be able to relax and get some sleep.
I've tried it all specialists, GPs, alternative medicines, Chinese doctors, depression meds.
It has been a long slow climb back to a place where I am functional most of the time and, like most people, I've lost everything along the way. I know it hurts deeply when family members expecially think its "all in your head", and I wouln't wish this on anybody for them to find out just how bad it is.
I have read proposed diagnosies from spinal operations to Post Traumatic Stress.
I tried the different medications as they were prescribed and, to be honest, they all seemed to be "coping" strategies not healing remedies.
Thank God for resources via the internet, I suggest you inform yourself about the symptoms.
This site give a very inclusive description of FM and its general affects.
I found that keeping a journal of how I feel, what I eat, the weather, all helped to sort things out as I went.
If you would like to add me to your friend list feel free to do so and ask me questions or just "let out" your frustrations somewhere.
Don't give up!
thank you so much for that. i actually went to the gp today to try and get referred to a neurologist. my gp says that i am stressed out but instead of getting angry, i retrovert it to be back inside me and am stressing my body out. he's like "so all your symptoms sound just like they are from the internet" i tried to explain to him that i did do research and finding out that more people are out there just like me that have these same symptoms, not that i was making them up. i am so tired of people not listening to what i am saying. its not all in my head. he wants to put me on celexa, which i dont know what that is, i think an anti anxiety drug, which i dont feel like i need anyhow. i am just tired of being tired. i am new to this website and joined just to find out more of what was going on, when i figure out how to add you to my friend list i will be happy to do so, and i really appreciate you taking the time to write.
As a doctor, here are my 2 cents. I think it might be a good idea for you to try to find a doctor that looks at things a little differently. From what you say, you might benefit from someone who will look into the bacterial balance in your intestines, your complete thyroid picture, vitamin D level and energy producing system...among other things. You are not alone. Docs who think this way often follow a "functional medicine" approach, though there are many different names for it. One source (but certainly not the only) you might want to check is "functionalmedicine *******". They have a listing of people who have taken their training. It's not a perfect solution nor is it the only source of information (or training for that matter), but it's a start. Do your research. For better or worse, this type of thinking is not learned in traditional medical training and it will be up to you to find a responsible provider, if that is what you want.
Good luck in your journey to wellness.
Welcome aboard ! I recently read about functional medicine and I think that is the approach I did for many years while I didn't have a diagnosis (although I know now that my practitioner knew I had CFS ; ^) )
I would be interested in hearing more about what you do. I hope you will also check out our Health Pages and feel free to add information if you'd like.
Thanks for the welcome!
The functional medicine approach works for many things, because it takes into consideration multiple areas of the foundation. For many people, that's important, because it's often a complex web of problems that is actually the problem. So rather than look for "the" reason, it can be more helpful to look at how environment (and toxins), inflammation, the immune system and nervous system, nutrition, bacterial imbalances, gut function, hormonal balance, oxidation and detoxification , genomic predisposition and energy/mitochondrial function (whew! - that's a lot) all add up in each individual person to cause symptoms. You can check out more about what I do at my web site, drHaiden.***. And I'll check out your Health Pages. I do hope your CFS is better.
Hi ! Thank you for your post. I am getting better and making progress... slowly but surely. I agree that toxins, inflammation, nutrition, hormonal balance and everything else you mentioned are so vital for CFS patients. We do have a very complex illness and a high allostatic load. I know that the majority of CFS patients I know, myself included, have to focus on nutrition, supplements and detoxification. It can get quite expensive. I know because I used this approach for several years and currently my specialist and a Naturopath have both recommended addressing my bacterial infection. So I am on a treatment protocol for that... but still being taking supplements and sticking to a strict diet and detoxifcation.
Above is a link to an online discussion with doctors from a Fibromyalgia Chronic Fatigue treatment center. Along with this discussion there will be an accompanying written document you can print out. The first page of the document shows the interconnection of the myriad of symptoms. This is the most comprehensive and easy to understand bit of info I have ever found of this condition and I've had it for 15 years.
Don't give up!. you can make it too
The problem is so many people are having MS symptoms, but can't get an MS diagnosis. Many of these people have fibromyalgia & CFS symptoms. For those people who are in limbo land... there is hope because there are treatments available that are treating all of these conditions. Dr. Garth Nicolson already talked about mycoplasma & other infections in these conditions and that is one option. Also, there is a new institute that has opened up in Nevada that is providing support to patients with neuro-immune conditions. Here's the info: