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Old 03-28-2011, 11:38 AM   #1
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I don't know what else to do??? HELP!!!

March 28, 2011
I'm at my wits end with this pain and frustration that has taken over my life for the past three years. I'm a 26 year old woman and I was diagnosed with fibromyalgia three months ago. It’s been an ongoing battle with medical center since. I've been to countless doctor appointments, tried numerous expensive medications, and made major lifestyle changes but nothing the doctors are prescribing me are proven to get this life destroying illness under control or manageable at least. I’m really starting to lose hope in ever feeling better.

Where is my pain you ask? It is in almost every muscle and joint in my body, from the bones in my feet to the ruthless headaches. To be more specific: My knees are constantly throbbing with stabbing pain. They are the worst of my pain areas. When I’m sleeping I wake up to the feeling of being electrocuted deep inside my knee caps. Painful popping and cracking with constant stiffness in both. My lower back has a constant throbbing ache. It is a sharp and stabbing feeling that radiates down to my butt muscles. All the muscles on the right and left sides of my spine feel tight and knotted up. Every morning is full of stiffness, cracking, and popping also. I have lost a lot flexibility and strength from this. My neck has a dull stinging pain that never goes away. The ache spreads more tightness down to my shoulders and is always cracking and sore. The pain travels down to my elbows, wrists, and fingers when it is really cold or sometimes for no reason at all. Some nights are almost impossible for me to sleep and I get migraines that shut me down for the day. I vomit just about every day and my stomach is constantly in a knot. The stress and anxiety that comes along with this illness is emotionally draining. My quality of life has gone down tremendously. If I do anything physical, I pay for it with days of pain after.

I'm unemployed and uninsured which has made all this virtually impossible for me to get the right treatment. <I have to use a community clinic> Every time I go in for an appointment there is always an issue with scheduling. Either they have no record of the appointment being made, the time they have in the computer is a different time than written on the appointment card the receptionist gave me, or my favorite, I supposedly called the day before and canceled which of course I would never do because it takes a month to get an appointment. They do not have an X-Ray machine and it has been 8 weeks since I had a pap test and the results haven't come back. Do they try to make this center so difficult to go to; you give up and go somewhere else?

<deleted>

I have seen a total of 3 doctors who are filling in for the last doctor who quit. The first doctor, (none of the doctors I are pain management doctors ) is the doctor who prescribed me the amitriptyline that put me in the hospital and gave me the wonderful $600 ER bill. I guess it could be worse but when you’re unemployed, a bill like that is pretty devastating. My blood pressure was spiking and then dropping like crazy. I thought my heart was going stop and I was dying which the doctors told me I very well could've. To make things worse, my boyfriend didn't believe me and made me drive myself to the hospital and go through all this by myself. I've never been so scared in my life. He also doesn't believe that fibro is real or that I'm constantly in agonizing pain. All he tells me is how miserable I am. He doesn't understand or care and it makes it so much harder on me. I hate the fact that this pain has changed me as a person. I used to be happy and have tons of energy. Now it is a struggle just to get out of bed.

The second doctor, has been the most consistent of all so far. I’ve seen her 4 times and she has been the most helpful by giving me the fibromyalgia diagnosis and prescribing me Ambien so I can sleep more than two hours at a time. I would like to say she is my primary care doctor. The only problem with that is she self admits that she is not specifically trained on how to treat fibro. She does listen to me and I feel like she genuinely cares about her patients but I have been seeing her almost once a week for the past month and I still don’t feel any better. So I think that explains a lot.

Seeing <the third doctor> was the worst experience I’ve ever had with a doctor. I told her all the medications I have tried and she said she didn’t have records of them. I told her I really want to stay away from antidepressants based on the fact they did nothing for the pain and I was having really scary thoughts that I’ve never had before. Aren’t you directed to tell your doctor if you’re having those thoughts when taking antidepressants? So she told me the only thing she can do for me is prescribe cyclobenzaprine (a muscle relaxer) and Citalopram (another antidepressant). She did not give me any other options or listen to my concerns about the antidepressants. She had zero empathy. At this point in the visit I was so upset I could barely speak. She basically watched me emotionally break down in her office because this was another time I’m leaving an appointment that I really can’t afford with prescriptions( I really can’t afford)for something with no proof if it actually works. It could be the most frustrating feeling in the world. The way she spoke to me was extremely unpleasant and it felt like I was rushed out of her office. It seemed as if she had more important things to be doing. Am I not as important as the next patient? I pay for all my visits and services before I even get to see the doctor. Why am I not getting the care that I need and that I’m paying for? Why am I still in pain?

To literally add insult to injury, I saw <this doctor> in pure desperation to help me get my life back and I’m treated with the upmost DISrespect. I was interrupted throughout the whole visit, had my health and wellbeing dictated to me by someone I’ve known for 5 minutes, and then shrugged off like I wasn’t her problem. She got up and left the room as I was still trying to talk to her. I couldn’t believe how a doctor could be so cold and heartless. I left that appointment in complete despair.

I’ve been going to the <clinic> for almost four months, sometimes once a week and the only difference I’ve seen is money out of my pocket that I really don’t have. Every day that I wake up in this agony, is another day lost to this debilitating illness. I’m at the point where I can’t live like this anymore. I’ve been suffering for what seems like an eternity and it feels like no one understands, cares, or can help. Why is it so hard to get the treatment I need to be functional again? I can’t waste any more time not living.

I guess I'm writing this to vent, sort my thoughts, and try and find someone who can help me or share their experience. At this point I don't know what else to do. I'm not expecting to be 100% pain free, just at a level where I can tolerate it. I've been on the fence about painkillers for awhile now and I'm not wild about the thought of becoming dependent on them but I read countless stories about people with fibro that have tried everything and the only thing that seems to help is pain medication.

My doctor gave me a prescription for Tramadol but it hardly touches the pain. I wish she would give me the chance to try something stronger but she is against using pain medications on someone my age. Whats the point of being young when I have to live like a 65 year old woman and limit everything physical I do. Everyday is a frustrating battle one after another and I really can't cope anymore.

Last edited by Administrator; 03-28-2011 at 05:21 PM. Reason: removed inappropriate identifying info

 
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Old 03-28-2011, 12:32 PM   #2
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Re: I don't know what else to do??? HELP!!!

I was 26 when I got diagnosed with spondlyosis, spinal stenosis, and osteoarthritis in my spine which basically limits what I am able to do physically. Since then I have been taking vicodin and flexeril so I don't know why the doctor told you that people that age don't need stronger pain meds. In 2008 I was diagnosed with ruptured discs in my neck (all of them due to drying out from Sjogren's) and nerve compression that caused my head to be stuck to one side for months. This past December I was (wrongly) diagnosed with fibromyalgia when what I really have (diagnosed by the new rheumatologist) is lupus and sjogren's syndrome. This diagnosis came after months of seeing different doctors and years of feeling awful but thinking that it was just the way I am. I was actually in the doctor's for an injection to stop migraine pain when she started asking questions that lead to the rheumatologist. Basically I am telling you that it takes a long time and several doctors to get a diagnosis and then its trial and error with finding the right meds that help. Are you eligible for health insurance through the state? In New York I get a reduced health insurance through the county I live in because my income is low. Considering that you are not working you are probably eligible for assistance of some sort. If you could get some help with medical insurance you would be able to see a rheumatologist who should know more about treating fibromyalgia. Until then, hot bath/showers will help muscle pains along with a muscle relaxer. It won't be great but should help a bit. I have had a headache for almost twenty years so I completely understand the daily headache with neck pain. I also had a bad reaction to Savella (which I didn't need and my body let me know it!) If your boyfriend doesn't believe you maybe you can get him to read about fibromyalgia.

 
Old 03-28-2011, 04:06 PM   #3
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Re: I don't know what else to do??? HELP!!!

Hugs to you, dear one. FMS is such a frustrating journey for anyone who suffers from this awful condition. I would suggest informing yourself by reading anything you can get your hands on. The doctors will have conflicting information to give you because they all have different thoughts about FMS and what causes it. I found that after I read every possible book, when I went to see the doctor I was able to fight back or agree depending on what I had learned. Don't sit back and get frustrated because this course will do you know good. Get a "college education" before you go to the doc, and help them to learn.

Your 'heart issue' could possibly one of two things. Panic attacks are common for FMS patients. Also, hypoglycemia, another typical issue in FMS, can cause some funky heart symptoms and can be scarey if you don't know this is what is going on.

Blessings,
Kirstee

 
Old 03-28-2011, 06:22 PM   #4
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Re: I don't know what else to do??? HELP!!!

I agree with brooklyngirl, you should look into getting on state insurance. Then you can hopefully find a doctor who will treat you with respect.
I am 26 as well, and was officially diagnosed earlier this month, even though I have had some of these issues for at least 6 years. I fell when I was 6 months pregnant with my son, displacing both sacroiliac joints, and I have not been the same since. I can also relate when it comes to disrespectful doctors. I have been treated horribly by many different doctors, and so now I have this haunting distrust for them in general. But don't give up. I suggest you try to get medicaid, then find a rheumatologist who will treat you like a person instead of like you are irritating them by simply being in their office (even though you are paying them...did I say I don't like doctors?) You don't have to settle for substandard care. You deserve to be listened to.

Good luck in whatever you decide to do, and let us know how it goes. <3
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Old 03-29-2011, 08:45 AM   #5
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Re: I don't know what else to do??? HELP!!!

Well I got my autoimmune disease diagnosed after being ill for 3 years, then my PCP shrugged it off as fibromyalgia. 14 years later, being sent back to a rhematologist for diagnosis of MCTD. My kids have hated me over being sick, they look at this diagnosis of fibro like it's all in my head. Other people do me this way too.

Muscle relaxants help me if I have muscle strain, which I have been getting alot of lately. They do not stop my muscle spasms even though they are supposed to treat that.

Alot of my pain is nerve pain and neurontin has been an angel to me. I need a higher dose, but it has at least stopped my pain from being severe.

Plaquenil, amazing for 3 months. That and doxycycline have been the only two medications to budge my fatigue.

NSAID's. Only one I can really give serious credit for is Toradol. That takes it all away. Ibuprofen helps to a degree, but not nearly enough. Of course doctors don't want to give you Toradol to use at home. I haven't tried prednisone but am more than ready to.

No doctors want to prescribe narcotics, they'd rather let you cry it out. Nice of them isn't it..

Tramadol is an awful choice for pain relief, like Tylenol. It's just not effective. But there are other choices of medications for pain relief, that are non-narcotic.

 
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Old 03-29-2011, 01:45 PM   #6
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Re: I don't know what else to do??? HELP!!!

I feel for you... There are days I'm so miserable I just want it to be over with... I'm lucky enough to have insurance & drs to work with me. Of course, I've had probs since 99 & didn't get help or a diagnosis until last year...
Have you applied for SSI or SSDI? I really think you should. You also need to apply for State Medical & Food Stamps. Don't be to proud! That's what it is there for.
Don't give up. It may feel hopeless now, but it will get better... Trust me, we have all been there.
Do you have Anxiety issues? You may not be depressed but can have Anxiety. Stress is the worst thing you can do to yourself. If you have anxiety, you need a good med for it. Since being on Cymbolta then Wellbutrin, I don't stress and worry all the time, it's great!
I agree, Tramadol is pretty useless.. That's what they have me on. I'm now at the point where I'm taking 2 daily just so I can move. It doesn't touch the pain, just takes the edge off alittle.. About the same as a glass of wine! lol
I'm waiting for my Dr to call me back. Supposed to have a referal to a neurologist 2 weeks ago... Then I'm Hyperthyroid yet put on sooo much weight. I'm also gonna see about a stronger pain med. Waiting 2 hours for Tramadol to kick in is awful..
Anyhow, we are here for you. Whenever you need help or just to talk... This board has helped me so much! I hope to see you around & also hope you will keep us updated! ♥
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 03-29-2011, 03:55 PM   #7
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Re: I don't know what else to do??? HELP!!!

im with you here im 25 been to so many doctors and spent so much money its not even funny the drugs alone suck before i was digonsed i lost over 50lbs then things started to get worse my back my headachs everything my body always hurt i was told tostop working out and take meds within a week i gained 20lbs and the other side affects were not fun either but one thing that has helped me is going to my chriopractor sorry bad spelling but she does elctro thearpy on my back for about a 1/2 hr at atime a few times a week with ice on it. that helps so much there is times i cant walk im in so much pain and usaually if you dont have insurance there willing to help you out and give you a better deal i now it does not solve everything but its worth a shot. i dont now what to do anymore either.

 
Old 03-29-2011, 08:51 PM   #8
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Re: I don't know what else to do??? HELP!!!

I first want to say Thank You so much for actually reading this and hanging in there with me! I've been feeling so alone with this lately and you have no idea how much I appreciate both of your thoughts and guidance. I totally needed it right now.

I'm so sorry to hear of all your health issues Brooklygirl. It made me take a look at myself and realize that it could be way worse, then again I don't know if I was correctly diagnosed either. But I am so sorry that you have to suffer with all those problems. I give you a lot of credit for being so positive.

I have looked into low income health insurance and its outrageous. I live right outside of Hartford, Connecticut. The insurance capitol of the world and The Charter Oak Health Plan is really my only option and its out of my budget. I don't qualify for Medicare because I make too much on unemployment when it is barely enough to live on as it is. I have filed every application I can find and have met with social workers with no progress. I still make to much on the peanuts unemployment gives me. This is what the state of Connecticut told me my best option is. And it sucks. I pay on a sliding scale for my appointments but that doesn't include the services and medications. Its really hard to fork over $125-$200 on medications that aren't working.

I have been doing a lot of homework about FMS and I have tried to share this information with my boyfriend. He has told me so many times that it isn't real because there isn't a blood test or X-Ray that shows it. It makes it so much harder to get better when the person closest to you doesn't believe you're hurting all the time. I wish I was making it up! I wish I could just turn it off whenever I wanted! Its just making this whole process even more difficult for me. Thank you for listening to me vent!

Here is a list of most of the things I've tried: Heating pad and blanket, ice, hot baths, exercise, rest, vitamins and herb supplements, AMITRIPTYLIN 25MG TAB, GABAPENTIN 300MG CAP, MOBIC 7.5 TAB,CITALOPRAM 10MG, CYCLOBENZAPRINE 10MG, TRAMADOL 50MG, ZOLPIDEM 10MG, HYDROCODONE/APAP 5MG/500MG that I got in the ER when I thought my heart was gonna blow up and for the first time in years I had some relief. Not the best but I was able to sleep and get somewhat comfortable. Problem is, my primary doctor won't prescribe it because it is Hydrocodone/APAP. I've never had a drug problem and I told her to drug test me before we try it and she still won't. Its so frustrating when I know the hydrocodone will help but its put out of my reach. I don't want to be on pain pills. I really don't, but if thats the way I can get my body and life back, i'm willing to take those chances.
As far as my heart goes, I've had panic attacks just about my whole life. I remember being in preschool and having them and I've always been able to calm myself down and get through it. The day I went to the ER something else was going on that I had never felt before. Like Brooklyngirl said, the medication didn't agree with my body and it let me know it.

I have an appointment tomorrow with the doctor I've seen the most and that I'm comfortable with so hopefully I'll get somewhere closer to relief. I don't expect to be 100% pain free so I'm not getting my hopes up. It's been really hard to except that I'll never feel like myself again but I can't sit back and let this take anymore of my life.

Well thank you so much and I really do feel better knowing I'm not alone. I know this is still the beginning and I'm lucky because lots of people don't get a diagnosis for years. Anyways, I'll let you all know how it goes tomorrow. Thanks again! I really appreciate all of support!

 
Old 03-29-2011, 09:09 PM   #9
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Re: I don't know what else to do??? HELP!!!

Just a quick note.. Let the dog out to go potty...
I take 2 50mg Tramadol & it atleast helps take the edge off... one 50mg pill does nothing for me... So, maybe try upping it...
I was on CYCLOBENZAPRINE to help me go to sleep. I quit taking it & switched to Melatonin... I have been so miserable, so gonna try it again. I didn't think it was helping with pain, but may have been.
Anyhow, just a couple thoughts.. .
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 03-30-2011, 04:45 PM   #10
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Re: I don't know what else to do??? HELP!!!

I showed up at my doctors front office crying for something and he gave me percocet. I ended up returning the junk along with a bottle of lortab and a prescription for lortab. Narcotics just make me sick at my tummy and vomit. But I used to get lortab at the beginning of my dx of fibro and I could get it again. He might be stubborn about it, but I could talk him into it. I can't believe you offered to do a drug test beforehand and she still won't give them to you. I used to take Lortab in the past so many times, for the fibro, for tooth pain, whatever, I never got addicted. Why not? I'm not a drug user wanting to get high. That makes the difference with these medications. I agree with themartinfarm, try 2. Melatonin is a joke for sleep. I've never found anything otc that works good. Ambien is the best one out there. Neurontin has been helping me but I think I might have to go back on ambien at some point.

 
Old 03-30-2011, 06:15 PM   #11
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Re: I don't know what else to do??? HELP!!!

That's what bothers me so much about some doctors. They are so worried about you becoming addicted to pain medication that they hesitate to prescribe it. I think a lot of that is the story they give you when they're just afraid of getting in trouble for writing prescriptions for narcotics, personally. I think there is a big difference between being physically addicted to a medication and abusing that same medication for recreational purposes. If you are a chronic pain patient and you find a med that gives you quality of life, and you are taking it as prescribed by your doctor, what difference does it make really if you are addicted to it? You become physically addicted to some antidepressants, but doctors are more than willing to throw them at you. I understand that there is an extremely low incidence of abuse with anti-ds but if you follow your doctor's orders you won't be abusing the pain meds either. And there is a host of other meds that are not only addictive but have the potential for abuse as well that docs aren't afraid to prescribe, like muscle relaxers and antianxiety meds.
Ok, I think I'm done ranting and raving for the moment. Just had to get that off my chest.
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Old 03-31-2011, 07:07 AM   #12
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Re: I don't know what else to do??? HELP!!!

Neveragain~ Are you making sure to eat before taking pain meds? I get sick if I don't... Melatonin isn't bad, I got stage 4 sleep, just didn't help me fall asleep...
My sister in law had a good point. I don't understand someone getting high on pills. They don't make me high or loopy... It's because I need them so doesn't effect me like others that take it to get high...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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