Fibromyalgia Thread

[onnawufei]

Onna! I can't take any of the fibro meds and I am on pain meds only. There is no shame in having to take them. You need to be open and honest with your dr. Hopefully he/she will work with you. If not, it's time to find one who will. Disney for me (and a few others on this board) tends to provide a calming/healing factor and we all seem to make it through. There is no shame in taking it slower. I find there are all kinds of fun at Disney. Last trip, DH and I spent an hour rocking on the chair in MK, people watching. It was actually one of my favorite memories of us during that trip.

I am also going the end of the month. What are your dates? Diane.

Ugh, I can't imagine being on pain meds only. You are a tougher woman than I am! My doctor doesn't like giving me pain meds because the more you take them the more you get used to them, the more you need and I'm still fairly young (29). I do understand where he's coming from but at the same time I need those painkillers! I love my doctor and am very grateful that he diagnosed me quickly when I know that a lot of doctors still don't even believe fibro is real, but I think if the next appointment doesn't go as well as I'd like I'm going to see about seeing someone else, at least for the fibro.

One thing that's kind of nice in a weird way, is that both my best friend and her mom have fibro. It's not nice that they have it, but it's nice that we can be there for each other and understand each other. We met years ago before I knew what fibro was and back when she only knew it was something her mom had but didn't know the details. Her mom "diagnosed" me before the doctor did.

I'm not really going at the end of the month, but at the beginning of October. October 2 - 9. Both DH and I have been having a fair amount of stress on top of my pain lately so we're really looking forward to our vacation!

 

[Tinker'n'Fun]

 

[brighteyes]

Thanks for asking and thanks to everyone who has been listening to me whine lately... So the verdict:

The ever spreading spots on my arms are okay, nothing looks cancerous, I just look funny. No they won't go away.

I have a sinus infection, pretty bad, he said my eyeballs looked swollen, and I thought of this guy!! Levaquin for 10 days along with a nose spray.

My ribcage and the tops of my legs are swollen. I have chostorchondritis which is a swelling of the rib cage, but he said I let it go way too long, he was pissed at me for this! So I get two lovely rounds of steriods after the antibiotic is done. So I will be in Disney on the steriods, so I guess I need to find a nice floppy hat... (insert floppy hat smilie here). The tops of my legs are being classified as my new trigger point from the Fibro, which he said is now at 7. I have been hovering at what we felt was a 4 for many years, now I am definetly worse off.

He gave me samples for Cymbalta. He wants me to take 30mg a day for a few weeks. Then he gave me RX for 60mg. I need to do some research on this med and I would appreciate any input from you all. I will not start this new drug until we get back from Disney.

My pain meds have been doubled after 6pm. He said if the kids are in, I am to take a double dose as needed. This is the quickest increase in a pain med I have had since I was 16... And trust me that was a while ago!

In a month I go back, and he will start the tests. He gave me a break since we will be traveling. I will need a new MRI of my back, neck, and head. He will re-evaluate for MS and also search new information re: the autoimmune I have. It is also time to recheck the spots on my lung that were being attacked. I also have to go for an EEG and the yearly EKG.

On a side note, I have definetely lost 6 pounds and he is happy about that. My blood pressure was 109/84 so I am on track to bringing it back down. Right now I have to take 1 1/2 pills each day and our goal is to be back down to the original dose by Christmas.

And our last conversation was about realization that "super woman" has to retire. He reminded me that there is no shame in asking for help, needing a cane, and or needing a wheelchair or ECV...Easier said than done for him. I will think about it.

As always, thank you all for all your concerns. It looks to be a natural progression of the fibro instead of the steady place I use to be at.


Many wishes and prayers for all your that you are pain free and enjoying the changing of the leaves.

Miss you all, Diane.

Tink,

I am so glad you went to the dr to get checked. Not so good that so many things are going on for you at once. When it rains, it pours I guess. At least your dr. is willing to wrk with you to get it dealt with and looked into. Hopefully that has put your mind at ease. I def agree with not trying the new meds till you get back from your trip but give it more than a few weeks like I did for the cymbalta.

I hope you had a better, less stresful day. Sorry I missed you on fb I was in the ladies room.

Don't you get so sick of hearing it's fibro, but I guess on the upside, it is worse than the alternative.

Now time to put all your worries aside and concentrate on your upcoming trip!!! I am soo jealous but glad for you.

Rest up, relax and get better before your trip.

 

[Copy_Pixie]

Hello friends!

Tink, I am so sorry to hear that you have been going thru so much lately! I'm doing the antibiotics and nose spray for a sinus infection too! So fun! I've had it for almost seven months now, so I'm glad the doc finally decided to be a little more aggressive with the treatment... Sending lots of prayers and pixie dust your way that all the tests come back fine, that you have a lovely time in Disney, and that you have plenty of pain-free days ahead.

Onna, welcome! I'm 29 too and recently diagnosed with Fibro. It's nice to meet someone else my age that knows what it's like. Like you said, not nice that you have it, just nice to have someone to share with I'm on Savella too and have actually found it to be, overall, pretty helpful, but it definitely took awhile to get there. Hope it starts helping you more!

Tigg, I am so sorry to hear about DD's friend. How horrible. Sending lots of prayers to all of you for strength and healing during this difficult time.

My experience with Fibro continues to be a roller coaster. I went to the doc a few weeks ago b/c I had been having so much pain and back at square one with fatigue. More than I had ever experienced in the past. She ran some blood work b/c she seems to think that every time I have a complaint it must be a vitamin deficiency. Turns out I was extremely anemic, like a saturation of 7% instead of 35% etc. So, she put me on a double dose of iron supplements, ran some tests for internal bleeding and when those came back negative, sent me to my GI doc to schedule an EGD scope. Ugh. So, I went for the consultation with the PA to set up the scope and she told me she was concerned it was Celiac and was leaving a note for the doc to biopsy for Celiac when he does the EGD. Not more than a few hours later, my doc called and said she suddenly realized it could be Celiac. Great. So, it seems both docs are convinced that is the problem. Only other problem is that they both seem to think that Celiac trumps Fibro, so my actual diagnosis would be that I was misdiagnosed with Fibro and actually have Celiac. I totally disagree. After a lot of research, it seems to me that Celiac and Fibro tend to co-exist and aren't mutually exclusive. Thankfully, she also referred me to a Fibro/ Rheumatology "expert", "just in case." I couldn't handle all of that tho before DL in about a week in a half, so when I get back from CA I will be doing the EGD and the specialist appt. It's just all very frustrating having to convince numerous doctors that Fibro doesn't fit in the neat, little box they would like to put it in. I also had my most infuriating Fibro experience to date when I called the specialist. The receptionist told me that they require Fibro patients to have a doctors note stating that they actually have Fibro before they will let you schedule an appt!!! Yeah, b/c I would totally lie about b/c it's so much fun. UGH.

Anyway, that's about all that is new with me. I'm so looking forward to Disney I can hardly stand it. We'll be there for 7 days but 2 of those days we'll be at the D23 Destination D event, which is not only exciting but means that I will get to sit down for 2 whole days! Sounds good to me!

Sending prayers and pixie dust to all for pain-free, stress-free days.

Alyssa

 

[EDuke98080]

Hello friends!

Tink, I am so sorry to hear that you have been going thru so much lately! I'm doing the antibiotics and nose spray for a sinus infection too! So fun! I've had it for almost seven months now, so I'm glad the doc finally decided to be a little more aggressive with the treatment... Sending lots of prayers and pixie dust your way that all the tests come back fine, that you have a lovely time in Disney, and that you have plenty of pain-free days ahead.

Onna, welcome! I'm 29 too and recently diagnosed with Fibro. It's nice to meet someone else my age that knows what it's like. Like you said, not nice that you have it, just nice to have someone to share with I'm on Savella too and have actually found it to be, overall, pretty helpful, but it definitely took awhile to get there. Hope it starts helping you more!

Tigg, I am so sorry to hear about DD's friend. How horrible. Sending lots of prayers to all of you for strength and healing during this difficult time.

My experience with Fibro continues to be a roller coaster. I went to the doc a few weeks ago b/c I had been having so much pain and back at square one with fatigue. More than I had ever experienced in the past. She ran some blood work b/c she seems to think that every time I have a complaint it must be a vitamin deficiency. Turns out I was extremely anemic, like a saturation of 7% instead of 35% etc. So, she put me on a double dose of iron supplements, ran some tests for internal bleeding and when those came back negative, sent me to my GI doc to schedule an EGD scope. Ugh. So, I went for the consultation with the PA to set up the scope and she told me she was concerned it was Celiac and was leaving a note for the doc to biopsy for Celiac when he does the EGD. Not more than a few hours later, my doc called and said she suddenly realized it could be Celiac. Great. So, it seems both docs are convinced that is the problem. Only other problem is that they both seem to think that Celiac trumps Fibro, so my actual diagnosis would be that I was misdiagnosed with Fibro and actually have Celiac. I totally disagree. After a lot of research, it seems to me that Celiac and Fibro tend to co-exist and aren't mutually exclusive. Thankfully, she also referred me to a Fibro/ Rheumatology "expert", "just in case." I couldn't handle all of that tho before DL in about a week in a half, so when I get back from CA I will be doing the EGD and the specialist appt. It's just all very frustrating having to convince numerous doctors that Fibro doesn't fit in the neat, little box they would like to put it in. I also had my most infuriating Fibro experience to date when I called the specialist. The receptionist told me that they require Fibro patients to have a doctors note stating that they actually have Fibro before they will let you schedule an appt!!! Yeah, b/c I would totally lie about b/c it's so much fun. UGH.

Anyway, that's about all that is new with me. I'm so looking forward to Disney I can hardly stand it. We'll be there for 7 days but 2 of those days we'll be at the D23 Destination D event, which is not only exciting but means that I will get to sit down for 2 whole days! Sounds good to me!

Sending prayers and pixie dust to all for pain-free, stress-free days.

Alyssa

Hi Alyssa!

As soon as you said anemic and I fibro I was going to tell you they need to test for Celiac. I, my DD & DS also have Celiac and I have fibro too. If you do have Celiac you can expect GREAT improvement in everything with a glutenfree diet. After your test, let us know and if you have Celiac I will be happy to help you wih food and diet etc. Feel free to PM me!

Erika

 

[melmathis]

well, i am trying to disability started. they are now going to send me for a mental exam for depression and a physical exam. not sure why, i go see a rheumatologist and have for the last 10 years. does anyone have any suggestions or ideas of what to expect while i am there.

 

[Tinker'n'Fun]

 

[EDuke98080]

well, i am trying to disability started. they are now going to send me for a mental exam for depression and a physical exam. not sure why, i go see a rheumatologist and have for the last 10 years. does anyone have any suggestions or ideas of what to expect while i am there.

They send everyone who files a disablity clain in order to have third party confirmation of the diagnosis. It is the normal progression of the review process. Unfortunatly, as Diane stated, there can be some miserable people who make the claimants feel horrible. Keep in mind there job is to weed out people who are really not eligible in order to save $$. Don't let them indimidate you, be honest and it will go fine.

 

[tiggspring]

Ugh, I can't imagine being on pain meds only. You are a tougher woman than I am! My doctor doesn't like giving me pain meds because the more you take them the more you get used to them, the more you need and I'm still fairly young (29). I do understand where he's coming from but at the same time I need those painkillers! I love my doctor and am very grateful that he diagnosed me quickly when I know that a lot of doctors still don't even believe fibro is real, but I think if the next appointment doesn't go as well as I'd like I'm going to see about seeing someone else, at least for the fibro.

One thing that's kind of nice in a weird way, is that both my best friend and her mom have fibro. It's not nice that they have it, but it's nice that we can be there for each other and understand each other. We met years ago before I knew what fibro was and back when she only knew it was something her mom had but didn't know the details. Her mom "diagnosed" me before the doctor did.

I'm not really going at the end of the month, but at the beginning of October. October 2 - 9. Both DH and I have been having a fair amount of stress on top of my pain lately so we're really looking forward to our vacation!

Welcome Onnawufei

I was diagnosed at 28 so I know where you are at. It will take awhile before you figure out what is right for you regarding treatment. Like Tink I only take pain meds and muscle relaxants and I use them sparingly going on/off them because on the one hand medications can give me strong and unusal reactions. On the other hand after a short period of time I get adjusted and need to increase doses. I have seen in my work in the medical and psych fields many people get addicted to these medications and that is far worse than Fibro so I spend alot of my time trying to gage what i really need and save the meds so I can leave the house and function. At home I have to suck it up which means alot of time in bed and a house in shambles. It also means I get to be at kids activities and fake being well for awhile when I leave home. A very delicate balancing act.

You'll find the gang here GREAT

melmathis

It took me two years my congressman and a Judge to get my SSI but you have to remember that was BEFORE FMS was a disease. I knew all the questions that they would throw at me from my days working with MS pts who had a hell of a time back in the 60's-70's and Lyme pts in the 80's. So I went to 13 Drs (psych. allergy, nerology etc) before I filed. My Dr said it wasnt necessary but he was wrong. I only had to go to one SSI Dr sho took one look at me and said i was disabled and they still denied me. The judge was so mad that when the occupational therapist at my hearing started to tell hime all the jobs I could do (never met me before) the judge told him to sit down and shut up. You have to understand the system is crazy. I had a friend with leukemia who after a bone marroaw transplant became mostly blind. the occupational therapist in his case said he could drive a bus!!!!!!! Try not to take it personally when you have trouble. If you are persistant you will preval. They try to weed out fakers by wearing you down but fakers dont get worn down becasue they are not sick. Sick people often give up.


We will be here for you every step of the way to let you know you are not crazy. They are. Now days it should only take you two or three rejections before you are accepted. If you expect that it will be less stressful for you. I thought I would lose my mind. Also dont be too brave. Really describe your worst days. They will make judgements based on your good days and since most of us dont have many of them but tend to want to focus on the positive it tends to hurt us in disability hearings. I still can bearly get out the words disabled to discribe myself. Prefering stay at home mom. Truth is that is a lie I tell myself to keep me going otherwise I would be depressed. Truth is for 15 years there have been more bad hours/days than good. I just chose to build my life around the good ones and hope for a cure


Tink I still need to get back to you regarding a long list of suppliment to try. I just want to get it right so I'm waiting for a day I'm up to being on the computer and my head is screwed on straight. Hopefully that will be in a few more days.

Thanks for those who thought about my DD11 the last week or so. She is turing into an amazing young woman a little too soon. Trying to organize a benifit concert in her friends memory to premote gun saftey awareness. THats my girl!!!! . She is sad but doing well. My father was in the hospital this week for a heart scare but is also doing well. I'm just sooooo tired. Think I would have had two good weeks without this crazyness.


Sending Pain free vibes and Pixie dust to all

 

[phorsenuf]

well, i am trying to disability started. they are now going to send me for a mental exam for depression and a physical exam. not sure why, i go see a rheumatologist and have for the last 10 years. does anyone have any suggestions or ideas of what to expect while i am there.

When I applied I was never sent to any Drs and I was approved on my first try. I was even retro'ed back a year and a half. Guess I was one of the lucky ones.

 

[tiggspring]

When I applied I was never sent to any Drs and I was approved on my first try. I was even retro'ed back a year and a half. Guess I was one of the lucky ones.

WOW that is great. Unfortunely that is usually only the case in terminal cases and since FMS is not fatal they usually put you through the mill. I'm glad you had such an easy time. We paid for this disability insurance you sould not feel like a criminal for getting what you paid for!

 

[Tinker'n'Fun]

 

[onnawufei]

Y'all are so nice and welcoming! Thank you!

Tinker'n'Fun I was on Cymbalta for a while and the up side was that it helped with my pain a lot. I was actually on it when I went to WDW last year and I only had one day where the pain was a big issue, and that was the day that it went from shorts weather to sweater weather in the span of a few hours so I'm not really surprised. Unfortunately the down side was that it had some side effects that I couldn't deal with. It made me shake so badly that it was like I was constantly on vibrate, and I had frequent and sometimes violent muscle spasms. But I haven't talked to very many people who had those issues, so I don't think they're common. I'm starting to wonder if that sort of medication just has that effect on me, since the Savella also makes me shake and have muscle spams, they're just a lot less noticeable and easier to deal with. Since the Cymbalta helped so much I'm considering asking if he thinks I could try a lower dose instead of sticking with Savella.

It was interesting being so shaky and at WDW though. DH didn't want me to touch things that were breakable, and when I did I handed them to him (carefully!) to put back so I didn't risk dropping them.

 

[tiggspring]

Yes, I think you were one of the lucky ones, and that is really a good thing. For Fibro awareness it is good to hear that some of them "get it". Also, I saw on another post you are having a bad day, so this is for you from all of us here..

I was on short-term disability for the required 2 years and received my SSD after appoximately 6-8 months. I was not denied, that is just how long it takes in my state to get through the first step.

On a side note, today I am drinking my lunch... Don't worry though, I made a huge smoothie with strawberries, blueberries, banana, milk, and yogurt. I woke up extremely sore and thought the extra vitamins couldn't hurt and may help!!

Here is hoping everyone else is painfree and fancy today!

In RI where I lived before SSI, disability is only 6 months after that you are on your own. So DH and I lost 40percent of our income when that ran out and another 20percent when he got his MSW that same year. Even though he had 8 years hard core psych experience none of it counted toward licensing and he had to take a huge paycut or never get his license. Only in mental health would getting a masters equate to a paycut!

WV didnt have short term disability and I dont believe PA does either. It is agony to wait two years when you have no safety net.

 

[brighteyes]

Sorry I haven't posted for a long time. I see we have a lot of new users here.

I have just been so exhausted for the last month or so, can't really get out of bed, can't stay awake again.

I have just started back to wrk at the afterschool program at a whopping 3 hours per week. To accomplish that feat I sleep all night the night before and till 1:30 that day till I leave for work. When I get home at 6:30 I can barely move to make dinner and just try to stay awake till bedtime.

So I am averaging being awake for about 9 or 10 hours per day. I just feel so useless. A month ago, I was feeling pretty good, still tired and pain but manageable. Really positivie about being back to work in the fall and looking forward to making money! Then the fatigue hit again and I am knocked off my butt.

But some of my bad news has turned good. When I graduated the school board said they were not hiring for the supply list So I was really bummed that I could not apply. My goal was to wrk the supply list so I could gauge how many hours I can work without it affecting my performance. After I know my limit, then apply for jobs that are within those. So I found out today they are hiring for the supply list.

There are also two jobs one at 20 hrs per week and another at 30. I don't think I can handle the 30 hr one but might try forthe 20 hr week one. What do u guys think?

I also have another month to wait to see if I am accepted on disability. I am allowed to wrk part time on disability I just dont know how much.

So at the very least I hope that I get accepted onto the supply list so that hopefully I can have a day or two between shifts to rest up. I am worried if I get the 20 hr week one that will be too much for me when I am going ina flare like I am now. And my dr STILL hasn't tested me for ebstein barr. I guess to see if I have Chronic Fatigue??

Anyway I see others are going through similar challenges with their health up and down, so I understand.

Hope you all feel better and the craziness calms down.

 

[Tinker'n'Fun]

 

[Tinker'n'Fun]

 

[Tinker'n'Fun]

 

[EDuke98080]

Hi Diane!

Sorry you are having a rough time. Here is what I would do; make a list of all the things you think need to get done. Once the list is done, cross out all that is not imperitive. It's ok to let it go. My house sometimes has a ton of clutter and backed up laundry. So what? I save me energy for the things that are really important - time with family, pets etc. Then go through the list and see what you can delegate. How old are your kids? It took alot off my plate once they could pack for themselves. I also have sat and talked quietly to my family about how I am feeling. I usually start with; I know it's not your fault that I don't always feel well and it stops me from doing all the things I would like to do. I am also sorry that it affects your life but unfortunatly there is nothing I can do about it. I am excited to go to WDW soon but I really need your help. What on my list can you help me with? It would really mean alot to me if you could help me get these things done so we can all go and have a good time. In the past that has helped me feel better because I am expressing my concern about what needs to be done and they actually have pitched in and helped. The best thing I ever did in my life is let stuff go and be satisfied with doing the best that I can, whatever that may be!

Hope it helps! I am thinking about you!

Erika

 

[Ashton7]

Since I seem to be the only one posting, if you have any ideas re: the following, please, even a PM will help.

I have 9 days to Disney and the Fibro is kicking my butt. Mornings are really bad and if i get up by 11am, that is an accomplishment. I do feel better in the afternoon, but I have so much to do so I am overwhelmed. Can't get DH or DS to help at all. I want to cancel their plane tickets and let them see how is feels.. But I won't that is just the anger speaking.

Anyone been here, and what did you do? I know if I write a list of what needs done each day I will feel like a failure. Do you think a large master list on the refrigerator so that everyone can check things off until we are ready. Has anyone done that and did you get the help you needed from your family.

I know my clothes and all the toiletries will make it, but I want to go and not stress. Getting harder each day to get them to understand! Ugh, thanks for letting me went. I am sure it will all get done and we will be fine, but the pre-planning stuff is knocking me down this year. Actually if I am honest, it scares me that I can't do it.

Hope everyone is doing well, I miss you all. Diane.

I can only offer my sympathy and empathy. I only have my one SO and I can't get them to understand after years of having fibro just what it does to me. Every time we travel I get stressed about packing because I need so many meds and things to help with the pain, etc., that there's no way I can pack light. My SO likes to pack very light and constantly gripes about my luggage and makes comments. It's made even worse because I'm the one who has the responsibility of packing everything that is shared and things like the camera equipment, the laptop, etc. ... and then I get griped at about the size of my luggage compared to theirs. Grrrr.

So I can only say I feel your pain and I hope you can get your family to understand and help out.