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Same Story as Before
13 Replies
Rahiin - March 24

As I have seen every doctor that is related to fibromyalgia within a 3 hour radius of my house, (literally I checked it on online maps,) today I had to travel even further to my two doctors appointments. They were 3 and a half hours north of where I live. That is how desperate I have become to find a doctor that even cares about his/her patients, and will even start a treatment plan for me. What did I get for that ridiculously long and expensive journey? They said, "Sorry, we don't treat fibromyalgia, we can't help you at all."

Hello the first office was a rhuemotology office, and the second was specifically a FIBROMYALGIA CLINIC. I was stunned by this, but held my temper and pressed them both times, saying "Look, I traveled such a long way to see you guys, I've researched your clinics before hand and I know that you have been known to treat fibromyalgia, so I'm really shocked as to why you're not doing anything." For the second one, I asked "Then why is it in your title of your office: Fibromylagia Clinic?"

But no matter what I said or what questions I asked, I received no help from either office. That trip was hard enough to make if you're a normal person, let alone with fibro, insomnia and a whole host of un-disagnosed psycological illnesses. It was challenging to say the least. Now I'm back to where I've always been: no treatment, no medicine, and honestly no life. My body has completly given out due to lack of any treatment. Even just a little bit would be an improvement, but it seems I cannot get even that.

Sorry if I seemed like I ranted or overemotional, but I really can't live anymore. This isn't really living; half crippled in your house day after day, not being able to do basic chores and tasks. What am I going to do?


lacey - March 26

Sorry to hear your having such a bad time. have you tried anti-inflammatry tablets.

I have been taking then for years and if I hadn't, I would've gone insane years ago. I am trying Lyrica ATM and as it gives me headaches, I am swallowing 4 asprin + codeine tablets breakfast and tea time. And that is the very best time for me, when I take asprin + codeine. I don't take it all the time, as I know it can harm your stomach but, I can't tolerate paracetamol.

I'm not telling you to take it, thats up to you but, I do and I get some well earned respite from the pain.


January - March 26

Hi Lacey - Do you think the Lyrica is helping you in any way? Have you noticed any area that it has improved life for you?

I don't want to take it, but I'm asking because I'd really like to learn more about it in general - there's so much conflicting information. I know it works for some people. But I'm wondering how can it be good for you if it gives you terrible headaches, and requires your taking so much extra pain medication? Is it helping in other ways?

Rahlin - your story is just overwhelming. Is there a consumer reporter in your area who could help you expose people who advertise "Fibro clinic" and then don't provide services? It seems like whatever you have tried, it doesn't work. Why wouldn't the clinic treat you?


lacey - March 28

Hi january, I cannot say if it's helping or not yet but, the headaches seem to have stopped and I saw my doc today, so I have to up the dosage to 1 full tablet. I was worried after trying the cynbalta but, I still got headaches with the Lyrica, had 1 bad dose of constipation last saturday night but I can sleep OK with these so far.

Having read a lot of the stories here, I really feel for everyone, thinking you are all so much worse than me but, no that I have taken no medication for 2 days, my body is screaming in pain. Doctor is hoping now that I will be taking full tablets, that things will start to settle down. I want to believe her and she was right about the headaches stopping after 2 weeks. I just hope they don't come back.

The doctor said today I seemed a bit better, which I hadn't noticed myself but, thinking back, yes I do feel somewhat better, although learning that I also have the fibrofog has set me back, just a little.

Rahlin we have a show on telly over here, called today tonight and ppl can have a whinge and they will investigate and often get results. You may have a show like that in the states. Worth looking into. The treatment or lack of, often leaves a lot to be desired.



Rahiin - March 29

I swore I replied back to you guys days ago. Sorry.

Lacey-I have tried anti-inflammatory tablets, asprin and codeine before. They don't help at all.

January-I could look for a customer reporter. I just don't have the time or energy to do necessary and vital tasks, let alone take on that project. But I will keep it in mind in case I get better. Thanks.


lacey - March 31

Rahin that's tough.

I don't know of anything I can suggest. I live on the anti-inflammatries and have almost constant pain but, it's sort of bearable, but when I get sick of it, or get a migraine then I take 4 asprin + codeine. Less than 4 doesn't work but then again, if you have tried it, it's not worth it to keep taking it.



Rahiin - April 2

Thank you anyways lacey for your replies. I appreciate them a lot.


lacey - April 4

Rahin there is another site with a forum, where members can write to each other re:help.

Do give up just yet. All us who suffer, suffer with you and know exactly what you are going through. I have been searching the net for about 4 weeks now and will not stick with just one site. I read everything I possibly can, even if I forget some of it, I have forgotten it all.

Take care


lucky13 - April 6

I was diagnosised with Fibro 3ish years ago, I have only recently started taking anti depressents to help it.
Before that I took Tylenol Arthritis to help dull the pain. Also heat therapy on my body and a cold pack for my head. Usually OTC drugs like Advil and Aleve don't help with Fibro pain as well as Tylenol.
The fibro fog is a bear, so I take lots of notes, to-do lists that I check off, and I print/save or write down any important info I want to save.

Research online about Fibro and treatments for it and take those print outs to your Dr and say here, this is what I have, this is what the treatment is, help me. I am currently reading Fibromyalgia for Dummies and I am enjoying it, it's informative.
No one else is going to advocate for you, so you have to be your own advocate. I don't know where your at, so i can't really offer advice on finding a Doc other then searching fibro friendly sights for Dr recommendations. If you can find a local support group, go talk to them and see what Drs those people see for treatment.

As far as your appts, did you ask them before hand if you could recieve treatment for fibro there and that's what your apt was for. Again this could just be the difference in where we live, but I have to say what my appt. is for when I call to make it, especially to a New Dr.

Good luck.


lucky13 - April 6

Also, have you tried self treatment? Maybe change your diet. Go gluten free, see if that helps.

Also avoid chocolate, alcohol, and artifical sweeteners.

Have you had blood work done to rule out other things like Lupus? Or checked your B12 or Iron levels? These things can go along with Fibro, and if they are issues then treating them will make one feel better.


Rahiin - April 7

Hi lucky

I have told my doctor about treatments that I have found online, but she always dismisses them, saying "You can't trust everything you read on the internet." I really don't know what to say in response to that, because it is true, so usually that doesn't go anywhere. I try really hard to advoate for myself, but I don't think I do a very good job.

No I did not have to say what my appointment was for, when I made it. But my primary doctor sent me there, if that helps at all. I have tried many self-treatment things, because that's the only thing I can do, because the doctors are no help. I eat a very strict diet, very few fat and no glutton, lots of fruits and vegetables, etc.

I have lots of blood work done. They ruled out Lupus, and my iron, B12, and thyroid levels are all normal.


lucky13 - April 8

How aggravating, yes you can't trust everything you read online, but when it comes from creditable sites, seriously, I can see you frustration a little more now.
Is it possible to change primary Drs? Maybe to one who is willing to help, even if they aren't an expert in FMS. There's nothing wrong with interviewing a Dr, or do you know anyone in the medical profession, a friend or neighbor who is a nurse or aide, someone who can recommend someone or help you get your foot in the door somewhere.
Try googling fibromyalgia support groups, see if you can find someone locally and maybe they can help suggest a Dr.


Rahiin - April 9


It might be possible to change doctors, but the thing is, I have switched primary care doctors 6 or 7 times in the last two years, over the same reason. I get a doctor, stick with her for a few months to half a year, just to make sure that I've explored every availible option I can get from that particular doctor. I don't want to switch too often because I know that these things take time. Then when it becomes apparent that she cannot/will not help me, I switch to another doctor. And I'm continueing to do that till this day.

The extra problem is now I have gone through every single primary care doctor at my clinic, it is small so they don't have a lot. They all are completly incompetant, rude, and not at all concerned about your needs. And it's a military facility, so they don't let you get your primary care anywhere else besides the clinic you are assigned to. So basically I am at the last doctor that I can get.

Believe it or not, I actually found a doctor, about a year ago, that I actually liked. She was very nice, gave me medicine that worked, listened to my needs, etc. But just after a month, she was conviently assigned to another clinic in another state. I was so mad that I finally found a good doctor, only to have her taken away from me.

I will ask if I can switch though. Thank you for the suggestion.


January - April 9

Dear Rahlin,

I've been surfing the net reading up on viral connections and fibromyalgia. I came across a site by Dr. Daniel Dantini. I read the testimonials and they sound good. I read about his approach, and he tests for food allergies and viruses and treats viral illnesses. Read the testimonials - they were interesting! Dr. Dantini says he has had fibromyalgia himself, and he also has a book out.

I thought about you (since I just read your most recent post and I know of your extreme frustration getting any help) - and here's why: though Dr. Dantini is in Florida, he will work with you over the phone, send lab test orders to you, and will work with your doctor. I have no idea how expensive he is, or if your insurance would cover it, or if you can get a dr. at your base to work with his input. I only discovered him today, so I can't vouch for him. But please at least check out his website and see what you think. Hoping you will be able to find some help from somebody soon!



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