Fibromyalgia Thread

[Tinker'n'Fun]

 

[viluvsdisney]

FMS gal, here. Diagnosed 10 years ago.

 

[LauraAnn630]

Tinker'n'Fun, So sorry. I know how you feel! Ive had a very similar experience with many doctors! Its very hard to find a good doctor that will listen and follow through. Pain management was a joke for me!

I have fibro, sarcoidosis and bad arthritis.

Its terrible when you have bad pain days and you cant take care of yourself, your children ( the way you want to) or the house... let alone work a job.

They think we just want narcotics because we are addicts. I had one doctor tell me in front of my children that I was there just to get drugs. My pain was off the charts that day! I asked for an order for a MRI 2 days later that same doctor called to tell me she had a script for vicodin for me. The next day she called to say I needed surgery my MRI showed a major spinal problem that could paralyze me! I had told her in the office the pain was unbearable!

OMG I could go on and on about the bad doctors and bad pain management clinic at the Cleveland clinic! They just wanted me to take 2 muscle relaxers (for fibro) everyday....well I cant sleep all day!

Im so tired of hearing take long baths and try to relax!

Because I have bipolar EVERYONE thinks Im a big liar!

I cannot begin to express how frustrated I am today. Im in pain and no one cares or helps.

 

[TinkerBean]

Thanks for the kinds words, I really need them today. I guess writing it down and re-reading it has at least got me from tears to anger. Not that anger is a good thing. I am going to write a letter and send it off to someone (not sure who, I have never had to do this before) and let them know what happened. And since I am on Medicare due to the disability, I can dispute whatever charges I get from the Drs. office to them. I swear, I won't pay them a penny. Don't care if they sue me. Medicare doesn't usually doesn't pay for the whole visit and I am sure to get a whopper of a bill from them.

It just irks me. Pain management to me means learning to deal with the pain. Whether it be with pain meds, physical therapy, whatever. But I didn't get any of that from them. Just a deep lingering feeling of being a "bad" person. Needless to say my fibro is flaring to the maximum with this and the terrible weather we are having.

I guess I am also wondering what you all do with the cold. I use extra blankets and have a heat wrap on my sore areas, but I really think a little exercise might help? What do you do? And does anyone have a suggestion on a very low-key way to work out. Even if it is a treadmill, I need suggestions. Thanks for being here for me. Diane.

Diane,

I think writting a letter is a good idea, if only to give you back your control over the situation.

My best friend is my heating pad and as someone mentioned on this thread, a heated mattress pad. I didn't know about those until I read it here. I went right out and found one at Target. I it. As for exercise, I have a treadmill. I try to do a little everyday, just to warm up my muscles. Stretching is also important for me. I also see my accupuncturist every week and that helps a tremendous amount. But there are days (like today) where the headaches and pain are so bad that all I can do is take the vicodin and soma and crawl under the covers.

to you. Flares are a b*tch to deal with. I am going through one now (it's been over a week) and I have to attend my dd class presentation in the morning and am hoping I will feel better for that.

I don't post here very often, but visit everyday. The folks on this thread are very supportive. We are here for you...

 

[tiggspring]

Thanks for the kinds words, I really need them today. I guess writing it down and re-reading it has at least got me from tears to anger. Not that anger is a good thing. I am going to write a letter and send it off to someone (not sure who, I have never had to do this before) and let them know what happened. And since I am on Medicare due to the disability, I can dispute whatever charges I get from the Drs. office to them. I swear, I won't pay them a penny. Don't care if they sue me. Medicare doesn't usually doesn't pay for the whole visit and I am sure to get a whopper of a bill from them.

It just irks me. Pain management to me means learning to deal with the pain. Whether it be with pain meds, physical therapy, whatever. But I didn't get any of that from them. Just a deep lingering feeling of being a "bad" person. Needless to say my fibro is flaring to the maximum with this and the terrible weather we are having.

I guess I am also wondering what you all do with the cold. I use extra blankets and have a heat wrap on my sore areas, but I really think a little exercise might help? What do you do? And does anyone have a suggestion on a very low-key way to work out. Even if it is a treadmill, I need suggestions. Thanks for being here for me. Diane.

My vote is for a Pilates machine. They have really good ones on QVC. They mainly stretch and strenghten your musles. I've had one for two years but found that i could not concentrate on the exerszes or the tape with children around and you need to do things in a slow fluid motion. I have managed to work with it three times in the past few weeks and it "hurts so goo" for my musles but my fatigue is SOOOOOOO bad right now that the days I have done it I have done nothing else. I tried thi chi but could not hold my balance and the tredmil put me in bed for days because
I always did one step to much.

 

[tiggspring]

Oh in a sharper image catalog I saw a heated body pillow!!!!! It was over $100 though!

 

[tiggspring]

Tinker'n'Fun, So sorry. I know how you feel! Ive had a very similar experience with many doctors! Its very hard to find a good doctor that will listen and follow through. Pain management was a joke for me!

I have fibro, sarcoidosis and bad arthritis.

Its terrible when you have bad pain days and you cant take care of yourself, your children ( the way you want to) or the house... let alone work a job.

They think we just want narcotics because we are addicts. I had one doctor tell me in front of my children that I was there just to get drugs. My pain was off the charts that day! I asked for an order for a MRI 2 days later that same doctor called to tell me she had a script for vicodin for me. The next day she called to say I needed surgery my MRI showed a major spinal problem that could paralyze me! I had told her in the office the pain was unbearable!

OMG I could go on and on about the bad doctors and bad pain management clinic at the Cleveland clinic! They just wanted me to take 2 muscle relaxers (for fibro) everyday....well I cant sleep all day!

Im so tired of hearing take long baths and try to relax!

Because I have bipolar EVERYONE thinks Im a big liar!

I cannot begin to express how frustrated I am today. Im in pain and no one cares or helps.

I know what you mean! Before I had fibro I had a pre canserous cervical growth. The first Dr did biopsies with novicain and no problem. The surgon did 9 more biopsies and said since it was not a "sensitive area" no novcain. Well I can tell you I felt every tear he made. Then he yelled at me to stay still on the table and when I said it hurt he repeated it was not a sensitive area it couldnt hurt! I wanted to take that clamp he used to do each biopsy and take a few samples from his "not sensitive area"!!! Drs like this a jerks!!!


I'm really in pitty party mode today. Nobody has been cruel like this to me in quite awhile (thank god) but It has been months since I had any sort of control over my fatigue. I can find ways to deal with the pain but how do you ignore falling asleep sitting up? Now I'm falling asleep by 10 and still sleeping or in bed almost all day. I'm so tired of being tired. I'm so worried I wont get a handle of this thing by spring and we will cancel our trip like we have done before. I really thought with all the kids at school I'd get control. I even had a fantasy of getting a part time job. This week I've even gone to all disposible dishes hoping that one less thing would help and i got worse!!! Today my head started to explode as a new weather frount came in and I just want to curl up in a ball and give up! But DH is out of town so I have to hold it together for kids at least until 10.

Ok pitty party over.....I just can't tell DH how bad I am right now because he needs to focus on his class tomorrow and he would be distracted by this or worse he might come home. I'll survive one night alone even if it does feel like its going to kill me. You know what I mean?

Oh and my darn computer wont let me use the smiles on the DIs boards. I love my smilies !

 

[tiggspring]

FMS gal, here. Diagnosed 10 years ago.

Welcome. I'm so glad you came to check us out! If you check out the hundreds of posts you will find we are generally a pretty positive group. Today were a little off kilter. Lots of Flares and a bad Dr experience have us or at least me ...a bit peeved. Back in October I heard about a new study linking the XMRV virus to FMS they are preparing to do clinical trials. If you havent heard of it You may want to check it out. I cant think enough to find the page but if you are intrested let me know and I will get that info for you.

Welcome again!

 

[brighteyes]

Erika,

I cannot comment on the mammogram. I have never been to one. I suppose that since I am now 41 it is something I should think about doing very soon. I hope you are feeling better now. Awesome news on the positive results. It is definately a valuable test as my friend is a 3 time survivor!!

Diane,

That is a terrible experience. No doc should treat their patients like that.
should write a letter. Here in Canada we can write a letter of complaint to the Ontario Medical Association and they will investigate.

I think I am lucky in the sense that the majority of my pain is the achiness. I have some stabbing sharp pain. I only have about 3 or 4 major flares a year so far which can last a day to three days. THen I am in pain and crying and cannot move even with all my meds.

That said if I walk too far, my calf muscles sieze and it brings me to tears. I use a heated mattress pad every night. Since the new year I have invested in Wii Fit Plus, I already had the Wii, and I got the biggest loser game.

I mostly do the Wii fit activities like some simple yoga poses just to stretch my muscles. I also do the hoola hooping, and the 2 min jog. The best one for me though I find is the free step. I can do steps on the board, (like a aroebic step board but lower) and I can set it for 10 mins and watch tv and it still counts my steps. But basically it is like walking in place. I do this anywhere from 20 mins a day to over 1 hour a couple times. I only do 10 mins at a time then rest, cause my calfs seize so I have to give them time to relax again. It is low impact but still moving and stretching my muscles. I must say I do find I feel better somehow. I am still fatigued, but not as much, and I still get achey but not as much. I have not done this for two days cause of school, and feel crappy and am so much stiffer. So back on tonight to get back to moving.

I realize that not everyone can afford a wii, but if you already have it the game is 99.00 and worth it IMHO. If not, I suggest getting a workout dvd that does walking. You could just do the simple walking or just walk in place for 10 mins. I also bought a excercise ball.

At physio they would have me lay on the floor with my feet on the ball and just roll the ball side to side with my feet. It just stretches your back and your ab muscles. I think any movement that is low impact helps.

I bought an elliptical but don't use it much cause my knee is giving me too much pain cause of the weight.

Sorry for the book, I hope some of this helps. Good luck.

 

[tiggspring]

Bright eyes great to see you! Glad the wii fit is working out. DH and I have talked about getting it since he enjoyed the boxing game over the holiday. Only thing I can get him to play now is Mario kart. Dont think he's going to lose much weight playing that LOL

 

[brighteyes]

I have only lost 5 lbs but 5 lbs is 5 lbs. and I feel a lot better. I am going to have to do more though to get this weight off but for flexiblility is does help me feel better.

I got this too as a way to get my son off the computer and us to do something together and it's working.

My friend has the wii active and likes that as well. The games on t he wii fit are fun but they are short, but if you do a whole bunch at one time you can work out for hours.

The yoga is good for my hips too. Let me know if you get it and tell me what you think.

Magic and pixie dust to all.

 

[LauraAnn630]

I do agree that if you keep moving its better. Some days that just isn't possible.

What is really the hardest for me is not working. I keep thinking I'm going to get back to work then something happens and its very depressing. Other people dont understand and that makes it harder. Like I want to NOT earn a paycheck. If I was getting paid every week it would change everyones lives in my family. I have dreams and goals just like everyone else!


I gained weight taking all the muscle relaxers and prednisone!
I was 260 now I'm down to 220. Losing some weight didn't help the pain.

Tiggspring - It will pass. Hold it together girl! LOL Sometimes we have to let some chores go. I just take care of the kids and the rest of the work will still be there tomorrow, Sunday, Monday, Tusesday...and so on...

At least its FRIDAY!

 

[tiggspring]

Got my hair done yesterday and at least feeling a little more human.

Thanks for the support!


Sending pain free vibes and pixie dust to all

 

[EDuke98080]

Hi to the Newbies!

Welcome!

I am sorry that everyone is having such a hard time these days. I find winter is the worst and now it's so cold! I've been flaring too.

My son got diagnosed with Celiac Disease this week. That make three in our family of four, myself, and both my children. The Dr. looked at my husband and said "I feel bad for you!" Poor guy is living in a forced gluten free world. He sneaks hostess stuff when he's not home, I see the wrappers in his car lol. She also wants us to meet the head of research in their Celiac Center in Boston. Yup - we would be interesting to study! Yikes! Darn Swedish relatives - thanks for the mutated genetics but why did I have to pass it both my kids? Isn't that statistically not probable?

Anyhow, I admire you gals who are exercising. I have been a complete lump.Keep up the great work ladies!!!!!!

Tinker N Fun - don't let those docs get you down. Noone should pass judgement until they walk in your shoes, we all deal with our situation in various ways and that is really ok! We all didn't choose to have this and compasionate help can be found. Write that letter, maybe start with the practice manager? Lots of huggs and pain to free vibes to all!!

Erika

 

[viluvsdisney]

Welcome. I'm so glad you came to check us out! If you check out the hundreds of posts you will find we are generally a pretty positive group. Today were a little off kilter. Lots of Flares and a bad Dr experience have us or at least me ...a bit peeved. Back in October I heard about a new study linking the XMRV virus to FMS they are preparing to do clinical trials. If you havent heard of it You may want to check it out. I cant think enough to find the page but if you are intrested let me know and I will get that info for you.

Welcome again!

Hi, and thanks for the welcome We're headed to FL in 3 weeks and I found this board when I googled FMS and WDW. I feel like I'm packing half the house to go on this trip - mattress topper, TENS unit, more supplements then I can count, my pillows, etc etc.
I'm a non prescription user because of the sensitivity factor.....and currently in the midts of rehabilitating 3 disks and 4 facet joints in my back damaged from the FMS. I used the WDW trip as my focus and goal to get better and stronger - but didn't quiet make it before we're going. So, I have to rent a wheelchair this trip. Glad to have found this group...nice to meet you all

 

[chell]

Thanks for the kinds words, I really need them today. I guess writing it down and re-reading it has at least got me from tears to anger. Not that anger is a good thing. I am going to write a letter and send it off to someone (not sure who, I have never had to do this before) and let them know what happened. And since I am on Medicare due to the disability, I can dispute whatever charges I get from the Drs. office to them. I swear, I won't pay them a penny. Don't care if they sue me. Medicare doesn't usually doesn't pay for the whole visit and I am sure to get a whopper of a bill from them.

It just irks me. Pain management to me means learning to deal with the pain. Whether it be with pain meds, physical therapy, whatever. But I didn't get any of that from them. Just a deep lingering feeling of being a "bad" person. Needless to say my fibro is flaring to the maximum with this and the terrible weather we are having.

I guess I am also wondering what you all do with the cold. I use extra blankets and have a heat wrap on my sore areas, but I really think a little exercise might help? What do you do? And does anyone have a suggestion on a very low-key way to work out. Even if it is a treadmill, I need suggestions. Thanks for being here for me. Diane.

Before I get to the part I bolded is the doctor part of a larger practice or is he on his own? If he is part of a larger practice or a hospital group send a letter to them. If he is on his own there is no one to send a letter to because I guarantee you the letter will be dismissed in his office. You can file a complaint with the medical board. But before you do you need to be aware that this is sadly, very sadly, common practice in pain management offices. They now drug test all new patients because so many drug seekers go there simply trying to get pain meds when they really don't need them. There is no way to tell who is lying and who really needs the meds I guess. Or they don't want to take the time. At the office I worked at every single new patient was drug tested and all patents were randomly tested. Sometimes people were called in to have their pills counted in the middle of the month as well.

As far as making you feel the way they did that is NOT acceptable or normal. Well with some of the doctors who go into this field it is normal because they have the "God complex" so bad. At lest that is what I have seen.

On to the bolded part. That is what you would think pain management would be. Sadly it is about giving you pain meds and injections. They don't teach you how to deal with the pain and ways to enhance your life. They don't do physical therapy or anything that will work with your body to help build it up. All they do is stick needles in you and bring you back in so many weeks for more injections. It's all about making money. It isn't about you or your pain. It is about their pockets. Sad but true.

So please don't take anything from your visit as personal. It wasn't you. That is how they are and who they are. They are cold. They aren't there for you or your well being.

True, there are a few out there who care but they are the few diamonds in the pile of manure.

HUGS!

 

[tiggspring]

Hi, and thanks for the welcome We're headed to FL in 3 weeks and I found this board when I googled FMS and WDW. I feel like I'm packing half the house to go on this trip - mattress topper, TENS unit, more supplements then I can count, my pillows, etc etc.
I'm a non prescription user because of the sensitivity factor.....and currently in the midts of rehabilitating 3 disks and 4 facet joints in my back damaged from the FMS. I used the WDW trip as my focus and goal to get better and stronger - but didn't quiet make it before we're going. So, I have to rent a wheelchair this trip. Glad to have found this group...nice to meet you all

Have a Great trip! I know what you mean about packing I need 2 body pillows a wedge pillow and three regular pillows to go to sleep and they all have to be the right kind. DH sometimes calls me pillow woman. I too cant take many meds because of my sesitivities. On our trip down all you could smell was Bengay and the aroma therapy motion sickness oil my daughter uses. When we opened the doors at rest stops people must have been going what the heck is that smell .I hear you can ask housekeeping at WDW resorts for a heating pad if you forget yours. I brought my body pillow size one last trip so I cant confirm this myself. Rest up and ENJOY!

 

[tiggspring]

Before I get to the part I bolded is the doctor part of a larger practice or is he on his own? If he is part of a larger practice or a hospital group send a letter to them. If he is on his own there is no one to send a letter to because I guarantee you the letter will be dismissed in his office. You can file a complaint with the medical board. But before you do you need to be aware that this is sadly, very sadly, common practice in pain management offices. They now drug test all new patients because so many drug seekers go there simply trying to get pain meds when they really don't need them. There is no way to tell who is lying and who really needs the meds I guess. Or they don't want to take the time. At the office I worked at every single new patient was drug tested and all patents were randomly tested. Sometimes people were called in to have their pills counted in the middle of the month as well.

As far as making you feel the way they did that is NOT acceptable or normal. Well with some of the doctors who go into this field it is normal because they have the "God complex" so bad. At lest that is what I have seen.

On to the bolded part. That is what you would think pain management would be. Sadly it is about giving you pain meds and injections. They don't teach you how to deal with the pain and ways to enhance your life. They don't do physical therapy or anything that will work with your body to help build it up. All they do is stick needles in you and bring you back in so many weeks for more injections. It's all about making money. It isn't about you or your pain. It is about their pockets. Sad but true.

So please don't take anything from your visit as personal. It wasn't you. That is how they are and who they are. They are cold. They aren't there for you or your well being.

True, there are a few out there who care but they are the few diamonds in the pile of manure.

HUGS!

Great responce! Much more modulated than my first reply. I was having a frustrating day and the thought of what she went through shot me to the moon! I got uniterupted sleep last night and this am so I'm a little more put together today

I talked to Dh about this and he said "She should file a complaint with facility's licensing authority. And the medical license board against the doctor for failing to complete a thorough hx yet providing tx." He is a Quailitay assurance manager for a Psych clinic in a large hospital system so he knows a bit about these things. I also would consider Filing a hippa violation with your state health department. I did this awhile back because I was having a ultrasound and they refused to let my husband in during the test. I had had dozens before with no problems (they said he might pass out while we looked at our 3rd baby). When they discussed this with me they made me stand in the hall in a johny and repeatedly made me go over my complete medical hx with no less than three people. They also didn't make sure it was safe for me to leave as they never checked why I was having a sonogram two weeks before my due date. State came in a fined them and more importantly made them change their polcies so no one else would go through this. When I worked in the Psych hospital I had to do drug testing and strip searches on kids nearly everyday. You are to do it in private rooms and if there is a concern about allagations with two staff members so you cannot be accused of some sort of abuse. You never do it in public where every patient can see you. That is wrong on so many levels.


Michelle how are you feeling? Its' below zero wind chills up here. Are you keeping warm in NC?

As you can see I got my smilies back. Guess I have to log on through Explorer. AOL giving me alot of trouble. I know AOL is old fashoned just have had my email there for 15 years and like doing everthing in one place.

Sending pain free vibes and pixie dust to all

 

[chell]

It frustrates me the way doctors treat patients sometimes. The doctor I worked for was a real jerk.

We are freezing here! It is supposed to get down to 12 tonight. Friday & Saturday we got 9 inches of snow. That is a LOT for us. We don't usually get more than a inch or two in a year. I love the snow but as the storm front was coming in my body could really feel it.

Hope everyone is doing well!

 

[LauraAnn630]

You have to send your complaint to the right person as I am sure you know.
Maybe an administrator or director of the facility. You might want to make copies and send it to a few people.

Let us know what if any kind of response you get.

Wishing you the best!