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New girl here!
16 Replies
ArtsyHeather - August 20

Hi everyone!
You can't imagine how happy I am to finally find a Fibro board that is alive with new conversations!

Please bear with me, as I have a lot of questions for you all!

So I haven't seen a rheumatologist for a diagnosis, but my primary dr is the one who said she thinks that I have Fibromyaliga. Do you HAVE to see a rheumy for a proper diagnosis? My primary dr knows a lot about fibro, but I wonder if I have to see a rheumy instead.

How did your fibromyalgia start? For me it was an episode of extreme burning in my sturnum and cleavage area on both breasts (on both but mainly my left). Went to primary dr and gyno and had a mammogram done and everything is fine, nothing there. I was convinced that I had breast cancer after looking up symptoms online......bad thing to do!

Then I started with feelings of "sunburn" on my upper arms, and upper back. Then started getting muscle twitching all over, and super tight neck muscle spasms.
I've always had some back pain for as long as I can remember, and I've always attributed it to having large breasts, and my legs have always gotten kind of sore on and off, but again I attributed it to being overweight.

It's insane how once my dr told me that she is going to treat me as having fibro, I look up the symptoms of it, and I have pretty much everything listed.
I'm just so glad that I found a board where people are active, and maybe I can get some support. Sometimes I just feel like I'm dying with all of the aches and pains I have, and it's a constant worry of "What if it's something more?".

I've told my dr about how I feel and she just put me on zoloft because she says I'm having "obsessive thoughts" about every ache and pain I have.
Anyways, I'm glad that I have fellow fibro sufferers to talk to about everything! My husband is an awesome man, but he can only help me so much, since he doesnt know how I feel.

Sorry if my thoughts seem mixed up and rambling, I'm just trying to get everything out that I've been wanting to ask other fibro sufferers!

xoxoxo
Heather

 

lucky13 - August 20

Has your Dr performed blood test on you to rule out other disorders, there are many that share symptoms with Fibro and they can often be missed or misdiagnosised, like lupus for example. So the first step in a proper diagnosis should be multiple test to rule everything else out, I had blood work, x-rays etc to ensure I was not suffering from something else.
I recieved my diagnosis from a rheumatologist, from my personal experance, my rheumy is more knowledgable then any other Dr I have seen, but finding a good, knowledgable Dr is tough, just keep up with your own research so you can be sure your Dr is doing what they can, but the advice I usually give is to find a good rheumy since they have the extra education and study in disorders like Fibro, but if your comfy with your Dr and feel they know what they are talking about then that is really good.
We can't post websites or links on here, but search the internet for the "Spoon Therory" It is written by a lady with Lupus and it is how she explianed how she feels to a friend, it may help your DH start to understand what you go through. I would also suggest checking out some books like fibromyalgia for dummies, to read with him. My husband did not accept my diagnosis at first and it was really hard on me, but he did his own research and learned that Fibro is real and it is hard to deal with.
Having a good support system is important to.
I try and check these boards once or twice a week, I may not be an ole' pro at this, my diagnosis happend 2 years ago, but I try to do my research and stay current on whats happening with fibro and am happy to talk about fibro with anyone

 

Stacey373 - August 20

Hi Heather - Welcome to the Group!

You asked about having to see a Rheumy doctor? I have never seen one. My regular doctor diagnosed me and then sent a referral to the specialist. I couldn't afford more doctors and tests so I asked her if I HAD to go see one and she told me no. Basically all the Rheumy doctor was going to do was confirm the diagnosis and then I would be sent back to my regular doctor for treatment.

I really like my doctor and I figure as long as she is treating me "right"....then I don't need to see any other doctor. If that should for some reason change...then I will go see a specialist.

I agree with Lucky13...Your doctor needs to rule out everything else. My doctor did so many tests and what-not that by the time the Fibro diagnosis came, there was literally nothing else it possibly could be. That will also put your mind at ease so you know there is nothing else wrong with you and you can just deal with the fibro stuff....but don't forget there are also many other "associated conditions" that go along with Fibro that you could be dealing with too.

Anyways...I also wanted to tell you that you can't keep "worrying about what could happen"....you can't focus on the negative. I admit I've had a really hard time dealing with this illness...but I eventually learned that being "positive" is about the ONLY thing we can control. A positive attitude will go a long way with this illness and you need to focus on all the things that you can do...not what you can't.

You can't keep worrying about what else might be wrong with you...that only causes stress and that is one of the worse things you could do to your body. Just take it One Day at a Time....that's what we all try to do to get through this.

Take Care of yourself and feel free to vent on here anytime....Someone is always on here to listen and give support. Take Care, Stacey :o)

 

Fantod - August 20

ArtsyHeather - Welcome to the forum!

My Fibromyalgia (FMS) started a result of a disc that failed in my lower back. L5 has left the building and the neighbors are packing... I also have TMJ, a raging case of GERD and advanced osteoarthitis.

I'm going to give you a crash course on Fibromyalgia (FMS) so that you have a better understanding of what is happening to your body.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. And, a high level of anxiety is also very common. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation, the World Health Organization and the Centers for Disease Control. Over the counter remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

If you don't want to share this website with your husband, family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation web site and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

I have to respectfully disagree with Stacey373 about not seeing a rheumotologist. They are specialists that are/should be up to date on the latest treatment protocols. Once you are established with a rheumy, perhaps your primary physician could do some of the monitoring. FMS is a highly complex syndrome to manage. A rheumatologist is the doctor best suited to help you manage your symptoms and rule out other causes for your illness. A primary doctor does not have that level of skill. There are now three prescribed medications to treat the pain of FMS. Lyrica is one them. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella (also known as Milnacipran was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

Muscle twitching and cramping can be helped with Malic Acid (tablet) which you can find at any decent health food store. It is very common for people with FMS to have overactive muscles even when they are completely at rest. Make sure you understand how to use the Malic Acid and any risks associated with taking it.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. If you require a sweetener, use something made from the nontoxic Stevia plant. Truvia or Sun Crystals are available right alongside the other sweetners at the grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

Not all doctors/rheumatologists are created equal. If you want to get a second opinion, go to the National Fibromyalgia Association website to see a list of fibro-friendly doctors in your area. Be sure to take a copy of your medical record and current tests with you to save time and money.

And finally, you are not alone. This is a great site for support, information, to ask questions and just vent. I hope that my comments are helpful to you in some way. Take care and God Bless.

 

ArtsyHeather - August 21

Lucky, Stacey and Fantod....THANK YOU!
I literally started tearing up reading your responses...it feels so good to talk to people who know what I'm feeling!

I have had a complete bloodwork done, they took about 5 vials or so of blood and tested for just about everything with that bloodwork. And it's funny you mention vitamin D because thats the only thing that came up abnormal. I believe they want your level to be at 25, and mine was a 2. Turns out I am vitamin d deficient, which was one of the reasons that my dr came up with the fibro diagnosis. She had me on the high doses of vitamin d for a while, and now I'm supposed to get vitamin d from the drugstore and take them daily.

That was her initial diagnosis, but then I kept having weird pains, and then ended up in the walk in clinic because the left side of my jaw felt numb and tingly. They did a scan of my head to make sure it wasn't anything like a stroke or tumor or anything like that. It showed nothing at all abnormal.
THEN.....about a week or so later I had a massive panic attack, out of the blue and my husband took me to the emergency room. They gave me a half of a xanax and took some blood....about a half an hour later I was feeling normal again and the blood work didn't show anything abnormal.....AGAIN.

After that I went to my dr for a follow up after the panic attack episode, and after sitting in the office, crying and telling her how I feel like I'm going crazy or like I'm dying or something, she said that she thinks I have fibromyalgia since every test I've had done was normal besides the vitamin d and the fact that I get depressed.

Stacey...I am usually pretty positive about things and just go with the flow, but those are on good days. Then I'll have a few days where I have a weird pain in my left shoulder blade, or something like that, and then I start with "Is it really fibro? Or could I have bone cancer...etc." For some reason my mind goes right to cancer, and being afraid that I have cancer, even though my dr has told me that she doesn't think that I have any kind of cancer at all, just fibro. Thats where the obsessive thoughts come in, and worrying about what if thats whats really going on, and my dr isn't listening to me, and just putting me on zoloft instead of doing more tests. Its like I know that I shouldn't stress myself out and think about the "what if's" but my mind goes right to it all over again. I think it's from not being in control of whats going on with my body right now. I'm not used to having to go to the dr all the time, and feeling just plain crappy all the time. I never used to get sick until I had pneumonia a year and a half ago and now this. I always prided myself on not having to take meds for anything. It's just all hard to swallow right now, like I'm turning into someone else.

Fantod, thank you so much for all of the info, I really appreciate it!
I will definately have to purchase the "Fibro for dummies" book, I think it's something my husband and I can both benefit from. My mom has fibro as well, so I can talk to her about stuff, but she's dealing with so many other issues that fibro is the last thing she's worried about. She's got degenerative bone disease, arthritis...lots of issues like that and issues with her back and hips....so she's got her own stuff going on.
Like I said before, my husband is the best man I've ever known, and he takes good care of me, but he just can't help me the way I need to be helped, thats why I'm so glad I found this site and you three to talk to!!
But again Fantod, thank you for all of the info, especially where I can find a fibro friendly dr. I think if I ask my dr to send me to a rheumy, she'll only aske me "why" do I think I need to see one, because she's one who wants to take care of everything herself. I think she was a little put off when I went to my gyno to get a second opinion about the breast issue that started this whole thing. It's time to look for a new dr, and at least now I know where to look.

Thanks again, I really appreciate your responses and I plan on checking the site daily! I think it'll be a BIG help!!
xoxoxo

 

Fantod - August 21

ArtsyHeather -Fibromyalgia (FMS) is an inherited conditon. It runs in some families. In my case, I believe that it comes from my Dad's side of the family. He has a lot of the "perks" associated with Fibromyalga (GERD, Raynauds, Restless Legs) but not Fibro itself. If your Mom has it than it is likely that you do too.

Anxiety is very common among people with FMS. You have got to try and stop ruminating on things that are worse. I'm sure that you know that you are making your symptoms worse by doing this. I'd like to encourage you to make an appointment to see a counselor and get some help with this issue. Get help now and try in nip it in the bud before it becomes engrained in your everyday life. Perserving quality of life where you can is very important when managing this syndrome. Many of us see a counselor for extra support and to better manage our illness.

Good luck and let us know how you are doing. We are all rooting for you. Enjoy the rest of the weekend.

 

Stacey373 - August 21

Hi Heather! I totally agree with Fantod...if I could afford to see a counselor, I would probably go see one! (don't have insurance right now) This illness doesn't just affect you physically...It can be VERY hard emotionally too. Which is why an anti-depressant is always the first thing on my list of "medication must haves." By the time I found this website, I literally couldn't handle this illness anymore. Thankfully this site has helped me more than anyone can imagine.

I used to worry about all the "what ifs" too. My mother would constantly bring up all the bad stuff that could be wrong with me. When I would get a migraine, I'd instantly start thinking I had an aneurisym (can't spell!) and I was going to drop dead. or I always thought I could have some muscle disease and that's why every muscle in my body hurts. I spent too many years not knowing what was wrong with me, so when I finally got the Fibro diagnosis, I was very relieved.

I realized in the past few months that I couldn't keep worrying about the "what ifs" and all the stuff that I can't do. And that's where the "positive attitude" came from. I really do understand how you are feeling. At some point I realized I had to quit worrying about all the things I couldn't control.

Anyways....I just wanted to explain that to you better. I apologize if I sounded rude or whatever the first time I wrote you. I think we all have felt this way and we have to get to the "positive" end in our own way and in our own time.

Take Care of yourself, Stacey :o)

 

ArtsyHeather - August 22

Oh Stacey, you were not rude at all.....I'm one of those people who doesnt take things the wrong way and doesn't get offended easily, so no worries! :o)
I've always done the same thing when it comes to any ache or pain I've had, I always think it's something bigger, and I've always thought that life can't just go right and be good all the time, that if things are going really well, that something has to go wrong and ruin it, and for me,
it's always thinking that it's going to be something medical.

My husband is always trying to get me to go to a counselor, and I didnt think it would do any good, but maybe it will.....I know I feel so much better just talking to you two on here so far! I think it's something that I'll look into. Can't hurt.

Thanks Fantod and Stacey for your help, I really appreciate it so much!
I will definately be on here quite a bit!
xoxo

 

Stacey373 - August 22

Hi heather! I'm so glad you didn't take what I was saying the wrong way. I was worried that I came off rude and I didn't mean it that way at all.

I used to think those same things as you. Life is going "too good".....what's gonna happen to end it or be a problem? I still believe that all the "bad stuff" comes in 3's...only because that's how it ALWAYS seems to happen with us!

I don't know why...maybe because I've gotten older...but I really don't think that way anymore. Over the past few years I've slowly become a very positive person, I guess. I do believe that everything happens for a reason....the good and bad. So maybe that's what has changed my attitude towards life and everything else. I always try to see the "good" and the "positive" even in all the bad stuff that happens to me and my family.

Don't get me wrong...I still have my bad days and I still get depressed and stressed over little things and I still worry about most everything and I still "feel sorry for myself" some times. But I have to say that overall...my attitude has changed quite a bit through the years. (hopefully for the better! LOL)

I'm sorry. I'm probably not making any sense at all! LOL Anyways...Just know that you have a friend on here. Take Care, Stacey :o)

 

ArtsyHeather - August 26

Thanks Stacey, I appreciate it!
You've all been so helpful and made me really feel like I'm not alone here. :o)

 

Manhattan - August 28

Welcome Heather!

I've had Fibromyalgia for about 2 years.... and sometimes I still think it could be something else. It’s hard to accept that it can’t be detected in any medical test. It seems to have so many different symptoms and the condition with me…seemed to evolve from when it first surfaced to now.
It first started similar to yours'.... I had burning pain.. which went down the right side of my body..which eventually went to both sides of my body and felt like it was wrapping it self around my body, I had restless legs, muscle twitching and strange cramps in parts of my body (like my feet), skin problems (eczema), cold chills, skin flushing, inability to sleep, anxiety... the list goes on and on ..when I initially went to the Dr. I came out with pain pills... she didn't have a clue to what was going on. However, I also kept getting migraine headaches, which I had years before and attributed them to allergies. To make this long story shorter... I've been to every kind of specialist (MD) and tried every kind of alternate treatment you can image. I've had MRI's, nerve tests, bloodwork, CAT scans, total body X-Rays,TMJ treatment, you name it...I've probably had it. I've also tried many different medications (Lyrica, Cymbalta, Neurontin,various antidepressants,ambien, tramadol, muscle relaxers) and everything seemed to cause some type of side effect...most of them really bad! What has helped the most for me is Accupunture. I was leary of it at first...but now I couldn't imagine functioning every day without it. I am medication free now and able to work a full time job, which a year ago...would have seemed to be an impossible feat. Also..I think the hardest thing is to accept that you have the condition ...initially I've bought every book I could find on Fibromyalgia... read every article online, seen every specialist, naturalist, etc... Once I somewhat accepted (after all other tests were ruled out for other conditions that do have similar symptoms as Fibro) that I have it...and changed the way I do things (such as exercise..I used to be hardcore..and lifted weights, ran...in terrific shape)...now I still need to exercise...but do yoga, and other things that do not hurt me... it's a total different lifestyle for me... Also..I was told by my Accupunturist that he has seen many patients 30 years ago that have had the same symptoms as Fibromyalgia which today they now have an autoimmune disease (such as Lupus), so he feels it could be the start of something, that hasn't developed where it can be detected by medical tests ..., since as I stated above… with Fibromyalgia...all test results will be negative.. so if anything… it is a wake up call to really start taking care of yourself...eating right, exercise... getting enough sleep, etc.
Another tip..I've been turned on to some great supplements...called New Spirit Naturals...you can look them up on line. The Dr. who invented the supplements...his nurse.. I was told when I called to inquire...used to have Fibromyalgia...which I've heard once you have it...you have it...it doesn't go away, but in remission.... I was told that the Dr. developed a supplement that the nurse took and the Fibro is now gone...don't know about that...but I bought it..it's called "FibroPro" and I do feel better since I've started taking it (it has Malic Acid as once of the other posters mentioned in a previous post)...and I'm not a salesperson..or affiliated with this company in any way...just had to share. Anything that helps...and also I've heard that everyone's Fibro is different... what works for me...may not work for you.
One more thing... I would definitely go to a specialist such as the rheumy and not rely on a general Dr. since Fibro is in that category such as other rheumatoid conditions. Also once all other conditions are ruled out…you may want to check out a Physiatrist (this is not a head Dr.) many people do not know about this type of Dr. They are a Drs. of Physical Medicine and Rehabilitation …these physicians are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move. Rehabilitation physicians have completed training in the medical specialty physical medicine and rehabilitation (PM&R). to help manage the pain…. Good Luck to you Heather.
Manhattan

 

mm30 - August 28

hi heather,
without going into too long a story i just wanted to say that i have been diagnosed in the last few months but i think i've had it for a long time. It's been brought to the surface from a very stressful time i've been experiencing. For me, depression and negative thoughts are a big part of my condition. I tend to get very fixated on different aches and pains i get. Although logically and from talking to everyone on here i know these things seem to be the norm, it can be very hard to get your head around. Especially when literally everything is affected from fibro and one day i can hardly lift a cup to the next i have lumps in my ribs and my hands are just fine.( i too have been to the doctor terrified with lumps in my breast etc) its so random. Honestly, i have a very hard time most days to be positive but i agree that when i do have a good day and manage to get out for a walk and get some air i feel a bit better. like i can breath deeper and think properly.
I think im going through a grieving process and i guess acceptance is hard. i dunno i havent been diagnosed all that long and not well enough informed but i wonder because there is so much that comes with fibromyalgia - will i really ever stop worrying or obsessing or second guessing? i cant imagine its something i will accept easily.
That is why this sight is a real gift and everyone here is great. There are some unbelievably informed people here who i always look forward to hearing from when i'm anxious about something. Their honesty is very refreshing which is something i know i definately need.

i really hope you find it as helpful as i have. i'll be thinking of you.

Welcome to the forum.

M ;)

 

ArtsyHeather - September 1

Thanks for the info Manhattan....I agree, I think this is a big wake up call for me to take better care of myself. I could definately stand to lose some weight, and eat better than I do, and I've been reading that exercise and eating healthy can really help with fibro. I will definately look into the FibrPro supplements too. Anything will help. Thanks for all the info, I really appreciate it!!

Hi mm30....it sounds like you and I are a lot alike :o)
I've always been somewhat of a "worrier" but when I started with the burning sensation in my breast and sternum area, I flipped and started looking things up on the internet, and it just snowballed from there. Next thing I knew I was calling in to work and laying in bed all day long and not doing anything else but thinking about how I was probably dying of breast cancer and no one was doing the right tests, and everyone was just thinking it was all in my head. Meanwhile, I was having burning pain in my back, skin flushing, muscle spasms....all the symptoms of fibro. It's the same thing, I just have to accept the diagnosis, and deal with it but it's just really hard to when there are so many different symptoms that go along with it, and occur at different times with no warning....it kind of makes me crazy.
I dont know why I've always had such medical anxiety though....I've always thought that I had something much bigger and badder whenever I have had something wrong with me. Like if I was dizzy, I'd think it was a brain tumor...for example.

I guess we're both lucky to have found this site to help us with our anxiety. And I'm always here for you to lean on, because it sounds like we have the same way of thinking!
Keep in touch, I'll be thinking of you too!

 

mm30 - September 1

absalutely heather like i say im completely new to it myself and im learning everyday or should i say through everypain :P.
Due to the fibro fog as they call it i find it hard to relay what i am thinking or want to explain when it comes to putting my fingers on the keys :D so hopefully my contribution doesnt sound like that from a five year old. lol.

(im going to go off on a rant now :D.. )

i just wanted to add that i think there was a combination of doubt because i dont want to accept and mistrust in the medical system for me.

When i was a little girl i started to walk with a limp. first it was just a limp and then came the pain (which was strange) at first people thought i was trying to get out of going to school and was making it up cause nothing showed on xrays. then i would cry out in the night with pain in my leg. drs said growing pains. but the pain kept coming. my leg got worse and worse and actually seized itself into fixed flection.Like as if i was bending it up from the hip.my friend had some crutches and i asked her for the use of them because i couldnt bear the pain anymore. i was xrayed again and all that showed up was that my hip socket was slightly out due to fixed flection so they put me in traction for 3 months. laying on my back and i was only 11. needless to say it didnt work after a lot of guinea pigging around i went to london england to a childs hospital. At that stage the damage was done and five years later they replaced my hip. i had a rare virus (one of its kind and i got it) that could have been stopped in it tracks at the start but due to bad medical system it did its damage.

anyway that was back in the 90's and things have moved along since then but ya its been one for the shrink and it does make you worry about diagnosis and what not. i dont think there is anything wrong with being self informed.

yes, i love this site anything my doctor tells me i always pop in here to back it up.

(hoping this made sense my head is kinda marshy this morning) lol

take care ;)

 

New Friend - September 4

Hi There. I really liked your feedback. You mentioned something about pain specialist. Are you going to one on a regular basis? (BTW..my name is Fran, nice to 'meet' you) I go every 2 months since my diagnosis 2 years ago. ( I beat cancer hands down and was proud of myself, but this is a whole new and different ball game, and there are days that I just can't play it.)
I am on Lyrica 450mg a day. Opana ER, 20 mg (it's a time released opniod) Cymbalta, 60mg a day, Diazepam to sleep and Percocet for break thru pain.

I also lost my right Kidney from Cancer last year and am scared of the prolonged use of drugs. Even though the Doc says they are okay, you always wonder. However, I need not explain my pain to you. I know you get it. So many others don't. Your Boss may be the number one person who does not understand, even after 25 years with the same company. Now that's questioning my credibility and it really ticks me off. Family does not get it, my husband to be doesn't get it, but he is supportive but is seriously concerned about all the medication, which by the way is over 300 dollars a month after insurance. Yikes. Another blow.

I have semi good days and the rest are bad. I am 42, a doting Grandmother who loves to pick up, play and hold my 2 yr old Grandson, but that seriously reaks havoc on my body (lower back, shoulders, and believe it or not, my darn feet and ankles). And I feel robbed of the best thing I've ever had. I sacrifice what I know will be a hard crappy day the next morning to spend time with him.

I was 140 before all the meds. Now I am 190. A lot has to do with the depression I'm sure, but I would ride horses and be 'hot' at 39, before all of this. Now I am frumpy and NON-MOTIVATED!! I hate it. I want to exercize, but my brain won't even enertain that thought.

I am to be married on October 10, 2010. (He was here before this, and has supported me, but I don't even want a sinlge picture of me on my special day) SEE? This FMS takes away so much. This is the first time I have reached out to someone about this and I am feeling a bit vindicated at the moment because you, a perfect stranger, understand.

I could go on and on about 'my level of pain' and where it is, etc. But with the lowest being a 5 on a really good day and 10 when I wake up and move around like I have rebar stuck in my back, neck, shoulders, and feet. But I don't have to. And I don't want to....the main reason is that I sound like a darn broken record and I know even the people who love me the most are tired of hearing it.

I better go. THANK YOU SO MUCH for reading this. I pray you and everyone else suffering from this will find relief.

Sincerely,
Fran

 

Fantod - September 5

Hi Fran - WElcome to the board! I just wanted to take a moment to respond to your post. You deserve a medal for everything that you've been through.

I have a rheumotologist and a pain specialist who work in tandem with one another. I have some underlying problems in addition to my good friend Fibromyalgia (FMS). The pain specialist has been a godsend when it comes to figuring out which of my many "perks" are causing a problem and what to do about it. I see both of them on a three month rotation unless things have taken a turn for the worst and I need to go sooner.

I understand how you feel about the weight gain. It is possible that the Lyrica you are taking is responsible for that. The most common side effect that people complain about with Lryica is weight gain. Unfortunately, rheumotologists are not proactive about changing medication when this problem becomes apparent. Have you tried Savella? This is the newest drug in the FMS arsenal. It was approved by the FDA in 2009 and has been used in Europe for years.

I'd also like to recommend that you purchase "Fibromyalgia for Dummies" which like all of the dummies series has good basic information. Read it and pass it around to friends and family.

Even with insurance, (I know this firsthand) it can be very difficult to afford medication. The pharmaceutical companies all offer assistance. You can find the information by going to their websites and looking for consumer assistance.

And finally, have you investigated the FMLA (Family Medical Leave Act)? Google it and you'll see several links that will explain how it works.

I hope that your wedding day is absolutely gorgeous. Take care.

 

New Friend - September 6

Thank you sooo much for writing back. (And especially for the Wedding Day wishes...we are going to 'elope', though everyone knows, and go to the mountians of Asheboro,NC.)
I am going to mention the new medication to my doctor. Thank you. And I know it's got to be the lyrica to 'blame' for the weight gain. That and the many times I am stationary vs being active.

This may sound weird, but I actually felt better the day after I wrote you. Almost as if I have an outlet that is true to form. It may all be in my head, but I really don't care, I felt better and that's all that matters.

Thank you also for the compliment of my beating Cancer. I was treated at UNC, near where I live and they are by far the best Doctors I've ever encountered. Too bad they didn't specialize in FMS.

I read some where that FMS can come from PTSD, or hopeless years of stress. I can sorta believe that. My mind and heart were wounded when I was 19 when my Father killed my Mother in front of my daughter. It was a long, painful domestic situation that ended horribly.I was the oldest of 4 children and a single parent myself. I had to seriously step up to the plate. I did have years of depression on and off and I really think all the 'mess' and heart ache that went along with it took it's toll on my body. I never really dealt with it mentally. I clammed up and just worked, rasied my daughter and rocked on the best way I knew how.

Now, 22 years after the most horrifc pain I could imagine, my body is screaming with built up emotions. I'm not saying that FMS all came from that, but I do know that even stress now, yes, we all have it, flares up my pain. I went to Vegas with some dear friends in April and the whole week I would say the pain was from a 3-5. Then...wham...back to the grind stone, and back to a 8-10.

I'm so darn torn between thinking about my life getting 'worse' as far as pain, but I've always thought I was a strong person. Maybe too strong. I think of times when I should have blown up vs 'just playing the hand I was dealt'...and then maybe I would have released some of this stress.

Who knows. I sure as heck know it is a TRUE PAIN.
I know it, I feel it, I live with it. No one can tell me other wise, however, I just want to be normal again. And I think that's the most disturbing aspect. Some times I even wish others could just have one day of what I go through. Just to have an understanding, but we all know that's not going to happen.

For now, I go to where I have always gone for help..on my knees in prayer. God held my hand during the worst time in my life and I 'prevailed'. I need him more now if that makes sense.

I am so glad you wrote back. Thank you very much.
Oh, I forgot to tell you...I am not very good when it comes to typing, so excuse any mistakes please!!

Have a wonderful day, week, and a great nights sleep.

I hope to be in contact soon. This really seems to help out. Even if it's in a small way physically, it's in a big way emotionally.
Thank you,
Fran

 

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