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I was diagnosed with fibromyalgia ten years ago.

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Old 09-10-2009, 05:29 PM   #1
Join Date: Sep 2009
Location: Pittsburgh, PA
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katsie2 HB User
I was diagnosed with fibromyalgia ten years ago.

I was diagnosed with fibromyalgia ten years ago. It was not easy getting a diagnosis, and I even had one doctor tell me that I was menopausal,...NOT. Not then anyway.

It began eleven years ago. I have always worked as a professional. I loved my my job. I have two children, who at that time were minors and at home with me and my husband. We were buying our home, had a dog, everything was good. I just got an offer to take a wonderful job with a telecom corporation. It was a great opportunity to try something new!

Anyway, I had been having migraines since my daughter was born. I had both children by c-sections. I began my new job,..the migraines increased, then my company moved more than an hour away from my home! So, I began traveling back and forth everyday, for three years. The highways here are death-traps, and the weather is horrendous.

I assisted on our initial IPO, worked exclusively for three corporate, in-house attorneys, and loved my job! I did contracts, insurance for sub's and professional consultants, then I moved onto licensing for the mid-atlantic region. It was great, though the drive was a nightmare.

One day, I parked the car in the corporate lot, got out, went to open the back door of my car to get my laptop out, and I could not move! My feet were hurting so badly, I could not believe it! I never had foot problems!!! Then when I tried to walk into the building, I could barely walk. My feet would not bend, and my legs began to hurt horribly. I should mention that I had not been sleeping well for four months before this happened. I would sleep eight hours to ten hours a night, and wake up feeling awful. I literally felt like a mack-truck had hit me. I could barely get dressed for work. In order to drive in that horrible traffic, I took a xanax, the doctor gave me for nerves.

Stress,...migraines, pain in feet, moving to all-over joint pain. I saw my general physician first, he sent me to a neurologist, who sent me to some other specialist. They did their tests, nothing turned up. I was fine. My g.p. told me that I was hormonal,..NOT. So, to prove that I was not hormonal, I did the blood test for it. I was not menopausal!

Anyway, I could not walk, and I was beyond exhausted. I could not work. I had to quit. One morning I happened, by luck, or whatever you believe in, to catch Katie Couric on her morning show. It was six months later,..and I was no better. Katie had a Dr. Nye, out of N.Y. City, on who was a lupus/fibroymalgia expert. He listed all of the symptoms for the lupus, and fibro, and I had every single one!!!

I called my g.p. right away, and begged him to see me the next day, wherein I asked him (as per Dr. Nye), to test me for lupus. It came back positive! My g.p. sent me to an arthritis doctor who confirmed fibromyalgia, the cousin of lupus, without the internal organ deterioration. Finally, after seven months of not know what was wrong with me, I had my answer! The saddest part is that if not for Katie, and Dr. Nye, I would probably be dead today, or in a looney bin.

Anyway, the arthritis doctor found 'umbrella' conditions as well, such as IBS, the migraines, vision problems, sleep problems, Raynaud's syndrome, chronic fatigue, and a non-related condition referred to as Sjogren's syndrome which dries out all of your organs, including your eyes.

He treated me, but the pain was going nowhere. I was forced to go to a Pain clinic, where the doctor there prescribed Duragesic patch. If not for that patch, I would still be in bed. I had been in bed for over three years, so I was glad to do whatever it took to get out of that nightmare situation! I have breakthrough pain, so he prescribed something for that too. The migraines are all but gone, because in the past few years, I have gone through menopause.

I know if I had not asked my g.p. to do the blood test for lupus, I would still have no diagnosis. I know it! I am thankful everyday for Katie Couric, and Dr. Nye,...if you are suffering with this disorder, you know why. IT HURTS!!! Plus you never feel awake, or healthy. You can barely move, because you are NOT lazy, are tired!!!!! Yes fatigue can make you feel awful!!!

I have had this diagnosis for years, and still continue seeing the arthritis doctor, as well as the pain clinic doctor. Finally, last year, I got them to work together, when I was diagnosed with my second bout of breast cancer, and I opted for a bilateral mastectomy in order to avoid it ever returning again.

You would not believe how much arm twisting I had to do, as well as my son, visiting them demanding that they cooperate the pain meds during post-op, and afterwards. I remember waking up from the surgery, and a nurse shaking me to wake up,...when you have fibro, you do not wake easily, and I always had a problem with being knocked out. All I could say was that "It hurts", and she looked at my chart, yelled for one of the nurses, and said "This is a chronic pain patient, get the morphine!"

Honestly, I had a lumpectomy fifteen years ago, and it hurt worse than the bilateral mastectomy, because I had the proper pain meds this time! I am sure of that!

The lupus blood test is the default (or was), for both lupus and fibro. If the arthritis doctor you saw, said it was not fibro, and you think you have all of the symptoms, go to another arthritis doctor.

My advice to all of you. Document everything you feel,..all your pains and aches to your G.P. Do what he/she tells you to do. See the specialists they tell you to see, but if you get no relief,...look elsewhere. I was getting ready to go to the Mayo Clinic, when I got this diagnosis. That is how bad it hurt, and how awful I felt. I honestly thought that I was dying of some horrible type of cancer! I was scared, believe me.

Good luck to you, and do not give up, even when you are exhausted. I know what you are dealing with. The fibro-fog is bad, you hurt, and you are tired, but YOU are the only one who can secure the diagnosis. Ask questions, do not be afraid of the doctors. If they don't speak your language, ask them to interpret, not take NO for an answer!!!!!

I am still in pain, and tired, but I am on a new drug called Savella. This is my fourth day, and I woke up yesterday, actually feeling like I could get right out of bed - if you have fibro, you know this never happens. With fibro you lay in bed, once you wake up, and sometimes you can lay there for an hour before you can move. It is a nightmare!

I just started the 50 total m.g., per day, on Savella. I pray that it works, and that I can be awake longer during the day! I will continue to post on how it works, so you can all see what happens. I know a lot of people have had bad experiences on it, but all I can say is that a little discomfort is nothing to me. I am desperate to get my life back, so I will tolerate the side-effects, if I can get back to being me!!!!!

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Old 09-16-2009, 06:09 PM   #2
Join Date: Sep 2009
Location: Edmonds,Wa 98026
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jamides HB User
Re: I can't get my doctors to give me anything for pain!

I have had so many of these same things happen to me. I'm not sure where you live but I would really reccomen seeing a rheumatologist. They do know alot about fibromyalgia. They still do not have a cure, bit it is getting acknowleged as a real sickness. They are usually not afraid of giving you some pain meds, they believe people deserve to be able to have some sort of life and when you are in horrible pain and can't sleep, it's just not possible to make it through life without some kind of relief. Try it out. I've had chronic pain daily for over 15 years, and my Rheumatologist doesn't want to hook you on drugs but mine has really helped me. I wish you all the luck and help you deserve.

Last edited by moderator2; 12-14-2009 at 06:08 PM. Reason: needless quote

Old 09-16-2009, 08:31 PM   #3
Join Date: Jun 2008
Location: Memphis TN
Posts: 469
sophie56 HB User
Re: I can't get my doctors to give me anything for pain!

If your Rheumatologist won't treat with narcotics to refer you to a PM that will....that's what I did.

Old 09-17-2009, 05:27 AM   #4
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Jenetti HB User
Re: I can't get my doctors to give me anything for pain!

I agree. DOCUMENT everything if you are just going to start seeing a pain management doc. On one page of paper (cause they wont look at more than that believe me) i documented what doctors i had already seen, dates i started with them, medication that had been tried, what had failed, what tests were done, what doctors diagnosis were and stuff like that. Went back 10 yrs but was very precise(sp?) in what i wrote. He then knew i had a long history of this, also had taken a bone marrow test, included that and results. By the time he glanced thru it (in less than 5 minutes) he knew i had complained about this pain for quite some time, knew what meds and how long i had taken them and they hadnt worked. Name the doctors, let PM doc know that youre not just suddenly complaining about pain and wanting strong meds for it.

Old 09-19-2009, 06:06 PM   #5
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Achy4216 HB User
Re: I can't get my doctors to give me anything for pain!

That is very annoying. I can't understand why when too many NSAIDs can be dangerous. Which is worse a heart attack, a blood clot or an addiction?

Old 09-20-2009, 09:04 AM   #6
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Re: I can't get my doctors to give me anything for pain!

I am currently on the Lyrica. I am one of the lucky ones it actually works for. I broke my knee-cap in May and have had Vicodin (from O.S.) along with Tramadol (from Rheumy). I work fulltime and can get through the day nicely if I take a Vicodin with a Tramadol before I leave for the day. I see my Rhuemy on this Thursday and I am going to request that she prescribe this for me. It's a combo that works for me at this time along with the Lyrica. I can't take anti-inflamatories due to Barrett's Esophogas so as long as I know what works for me I'll let her know. It might not work forever, but for now it is. When I can do more excersizing things can change again. Have to go with the flow for now and hope she gives this to me. She is a good listener and a little more trusting of how her patients feel thank God...could it be because she's a woman...hmmmm
Low pain days to all,

Old 09-24-2009, 09:14 AM   #7
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tinkertot HB User
Re: I can't get my doctors to give me anything for pain!

hi there,
sosorry your in alot of pain. I was reffered to pain clinic here, where they have suggested different options. i use a Tens Macine and I find it does help. They gave me one to try out, which wasnt brilliant but it did help. I have now bought my own one its great. It doesnt cure the pain, but it does give you relief from the pain when you are wearing it. That to me is a godsend!. Headaches, well, sometimes nothing seems to shift them, but again I did put the Tens Machine at the bottom of my neck the other evening and it really helped to ease the tension and pain. Any good chemist sells them, and they vary in prices according as to how high tech you want to go............Take care.

Old 11-10-2009, 11:37 AM   #8
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Location: Lake Worth,Florida,USA
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domesticgk HB User
Re: I can't get my doctors to give me anything for pain!

I was just reading through all of the posts on here. I have been seeing a doctor for years and he is no longer practicing as of September. He gave me a note for the MD that the whole family see's for checkup's, flu etc.. I had gone to him originally explaining my symptoms and certain a certain spot on my back will literally cause my head to shake, and he said well it is all connected, this was 10 years ago, and I found out that he told my husband that my symptoms were impossible, he gave me baclofen for back pain, I took one of the baclofen and hated it, he kept prescribing biaxin (antibiotic) assuming I had a sinus infection, I went back in with stomach issues, so he sent me to gastro guy and he said it was from overuse of Advil/nuprin which I took in large doses and gave me Nexium and told me to lay off so much Ibuprofen, so going back to MD he gave me a steroid, when I read the side effects I didn't take it, and the Nexium caused weight gain ( I think I am the only one in the world with that side effect) I still have it and use it maybe every six months to a year if I have to, but the Doctor I was seeing that is no longer practicing found a combination that worked for me. When I went in with the note this past Friday, he said I don't know what all this is we were treating your stomach, so I explained that isn't the original reason, it was the headaches, and back pain, and told him that he gave me the baclofen and handed him the steroid still in the package that I never took. I kept doing research online and he had sent me for gallbladder, liver, and others trying to find out what was wrong, and just gave me the steroids. He wants me off of everything the other doctor has been giving me since I finally gave up on him, and just went there if I had the flu or was taking my kids in. The docotr that diagnosed me with Fibromyalgia, gave me a combination of vicoprofen, for pain, phentermine for the tired,groggy, add type symptoms, and restoril for sleeping pill. He wants me to stop the phentermine, and see him next month, and then stop the vicoprofen, and then the restoril, and then he will prescribe what he calls appropriate for the fibromyalgia.I honestly don't know how I am going to go off all of them, before I am prescribed something else. He agreed with the other doctor about it being Fibromyalgia, but I have taken muscle relaxers tha baclofen he gave me and soma once for a fall down a flight of stairs, and I was given zoloft by my obstetrician after having my second child because I was crying in her office I told her I am tired not suicidal, what I needed was a babysitter. I hated the Zoloft and stopped taking it after a week which I guess I wasn't supposed to do but I felt like a complete zombie. I have no Idea what he has in mind,I asked him are you talking about giving me anti-depressants? He said well some of them are, I have read so many things on the internet since that appointment on Friday, and everything antidepressant wise doesn't look to me like it does such a great job and I have a friend who is bi-polar needless to say he is just a shell of himself now they put him on cymbalta, and he just is there blank face. I have been on this combination for about a year and a half. The doctor who prescribed it to me was from my weight loss clinic. I have been seeing him for 15 years. I have been on maintenance but I go in and am weighed once a month and he checks and makes sure everything is ok. He told me there is a new med out I think he said Savanna or something and not to let the MD give it to me that he thinks it will make me suicidal. He knows me and we have tried combinations of different things over the years and he also prescibed bp meds for me to. Our family MD just said it was ridiculous and he wants me off all of them but the bp. I don't understand why he needs to switch everything when this is working for me. I have read other threads where people are taking much stronger meds than vicoprofen, he said the restoril was the least of my problems( he prescribed lunesta for me a few years back) it didn't work and left a weird taste in my mouth and messed up my stomach, so the restoril is the last one he is going to take me off of. Luckily I still have phentermine here, because he didn't give me a presciption for it and just said I can't take it anymore, but as we were leaving the room I told him I still had it and I would take the dosage down through the month. If I don't take it I literally can't get out of bed, and when I do I get nothing accomplished at all because I can't think straight and end up wandeing around thinking why did I come in this room. I usually don't take all that was presribed to me, cause he had me on one and a half a day, some days I will only take half , so Luckily I still have a bottle left, but I usually take one. I would love an opinion,I am sorry this is so long. I don't know if I should go to another doctor or if I should follow what he says and just get off all of them and then take what he prescribes. My family doesn't really get it, so needless to say if I am off of all of them at once I really don't know what is going to happen around here. Yesterday was a bad day with a hurricane passing by our state which dropped the pressure and gave me a disabling migraine, but the kids still had to have dinner, and hubby came home and ate and crawled in bed. He just says to me at times, what happened to you, you use to do so much more. I could probably chop my head off and they would still expect me to do everything, so I am freaking out about a change in meds and a lack of anything in between.

Old 11-15-2009, 08:24 AM   #9
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Madeofglass HB User
Re: I can't get my doctors to give me anything for pain!

I need effective pain killers too! And my doctor only prescribed melatonin for sleep... yea right... although yea I do understand that one can't take sleeping pills on a daily basis but still...! Antidepressants doctors are willing give out, but then again I can't take em due to side effects.

Old 11-15-2009, 10:08 AM   #10
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Re: I can't get my doctors to give me anything for pain!

you try asking your doc to add trazedone to your regime. It's a try-cyclic anti-depressant no longer used to treat, but when added to current AD meds can help you sleep. I take 50mg every night, it helps a lot.
"The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live in the present moment wisely and earnestly." Buddha

Old 11-29-2009, 12:02 PM   #11
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sophie56 HB User
Re: I can't get my doctors to give me anything for pain!

My Rheumatologist would not prescribe anything for pain so I ask him for the name of a PM that prescribe pain meds and he gave me one.

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