Officially diagnosed!!
Survivor2007 posted:
Saw my doc yesterday and received the official diagnosis of fibro. I have been feeling awful for several years now, and slowly getting worse. I have battled breast cancer and all of the surgery and reconstruction, had a severe fall causing me to be air flighted to a trauma center and resulting in fractured and compressed vertebrae. With each of these issues, I was able to bounce back relatively well, but found that my energy and concentration seemed to be less each time. Of course, I believed it was all the result of the impact of these major medical events. Now it has been over 2 years since the back injury.....and I was not gaining ground. Aching, muscle spasms, headaches, sleep problems, joint pain....well, you all know the drill. Finally a friend suggested fibro, and when I looked it up it was like a choir singing in my head....ahhhh, that's it!! The mental fog, the fatigue....have cost me 2 jobs in past 2 years. Depression....feeling that I was becoming useless. But the body aches are the worst. I am already on Cymbalta, Trazodone, and Oxycodone for muscle pain, sleep and back pain, respectively. So, my doc and I agree that I am already probably on the right medications. He suggested that I consider going for SS disability....is collecting my history of medical records to help make the case for me. I am afraid that this may take more time than I can afford, I need to have some income. I am also afraid that this will interfere again should I get another job...and I don't want a track record of being let go from jobs. I have had over 25 years of a successful career....and these job losses are humiliating.
So, that's my story. I would appreciate any feedback or advice regarding what to do to take better care of myself and to get the disability through as smoothly as possible.
So, that's my story. I would appreciate any feedback or advice regarding what to do to take better care of myself and to get the disability through as smoothly as possible.
5 Replies |Watch This Discussion | Report This| Share this:Officially diagnosed!!Saw my doc yesterday and received the official diagnosis of fibro. I have been feeling awful for several years now, and slowly getting worse. I have battled breast cancer and all of the surgery and reconstruction, had a severe fall causing me to be air flighted to a trauma center and resulting in fractured and compressed vertebrae. With each of these issues, I was able to bounce back relatively well, but found that my energy and concentration seemed to be less each time. Of course, I believed it was all the result of the impact of these major medical events. Now it has been over 2 years since the back injury.....and I was not gaining ground. Aching, muscle spasms, headaches, sleep problems, joint pain....well, you all know the drill. Finally a friend suggested fibro, and when I looked it up it was like a choir singing in my head....ahhhh, that's it!! The mental fog, the fatigue....have cost me 2 jobs in past 2 years. Depression....feeling that I was becoming useless. But the body aches are the worst. I am already on Cymbalta, Trazodone, and Oxycodone for muscle pain, sleep and back pain, respectively. So, my doc and I agree that I am already probably on the right medications. He suggested that I consider going for SS disability....is collecting my history of medical records to help make the case for me. I am afraid that this may take more time than I can afford, I need to have some income. I am also afraid that this will interfere again should I get another job...and I don't want a track record of being let go from jobs. I have had over 25 years of a successful career....and these job losses are humiliating.<br />So, that's my story. I would appreciate any feedback or advice regarding what to do to take better care of myself and to get the disability through as smoothly as possible.
Dollbug responded:
Hello and welcome.....MiMi in NC....sorry that you are having to deal with so much right now. I am sure though that you will soon find something that will help you cope better. I would like to encourage you to be sure and ask your doctor to check your Vitamin D level....if you have not already done so. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. It is a simple blood test BUT you MUST ASK the doctor to run it as it is not included in the normal bloodwork that the doctors do.
The disability process was a hard one for me. I was denied the first time. I was laid off of my job 2 days after I had carpal tunnel surgery back in 2005. I had disability benefits that I had paid for through my employer and since I filed for a worker's compensation claim the company did not allow me to get the disability benefits either...and eventually they also wrongfully denied my workers' compensation claim as well. I then had no choice but to apply for disability....I was also denied the first time. But I appealed the decision and actually contacted my state representative and was soon approved. This still took several years though.
It was a very stressful and hard road for me, but I did not give up.
I hope that you will get approved on the first try with yours. As you probably already know though, the system is very broken....and they do everything they can to deny the benefits that people are entitled to if they are no longer able to work. You can do this yourself though online...and it is really good that your doctor is supporting this decision.
I would also encourage you to check out the info under *tips* and *resources* that you can find to the right of this page. You will find some very good *tools* that perhaps you have not thought of trying.
It does take a trial and error process to find the right combination of tools that will help you cope better....so hang in there and find what works for you. We are all different and what works for one may or may not work for another.
Learning how to pace, pace and pace even more is so very important....we, FMers, can no longer push ourselves to the limit. Most of us are use to doing this.
Dealing with the wrath of the dragon is a challenge for most of us. I hope that you will post often, ask questions, make comments and/or suggestions...
Take care and good luck.
MiMi
The disability process was a hard one for me. I was denied the first time. I was laid off of my job 2 days after I had carpal tunnel surgery back in 2005. I had disability benefits that I had paid for through my employer and since I filed for a worker's compensation claim the company did not allow me to get the disability benefits either...and eventually they also wrongfully denied my workers' compensation claim as well. I then had no choice but to apply for disability....I was also denied the first time. But I appealed the decision and actually contacted my state representative and was soon approved. This still took several years though.
It was a very stressful and hard road for me, but I did not give up.
I hope that you will get approved on the first try with yours. As you probably already know though, the system is very broken....and they do everything they can to deny the benefits that people are entitled to if they are no longer able to work. You can do this yourself though online...and it is really good that your doctor is supporting this decision.
I would also encourage you to check out the info under *tips* and *resources* that you can find to the right of this page. You will find some very good *tools* that perhaps you have not thought of trying.
It does take a trial and error process to find the right combination of tools that will help you cope better....so hang in there and find what works for you. We are all different and what works for one may or may not work for another.
Learning how to pace, pace and pace even more is so very important....we, FMers, can no longer push ourselves to the limit. Most of us are use to doing this.
Dealing with the wrath of the dragon is a challenge for most of us. I hope that you will post often, ask questions, make comments and/or suggestions...
Take care and good luck.
MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....
My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
Report This| Share this:Officially diagnosed!!<b>Hello and welcome.....MiMi in NC....sorry that you are having to deal with so much right now. I am sure though that you will soon find something that will help you cope better. I would like to encourage you to be sure and ask your doctor to check your Vitamin D level....if you have not already done so. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. It is a simple blood test BUT you MUST ASK the doctor to run it as it is not included in the normal bloodwork that the doctors do. </b><br /><b></b> <br /><b>The disability process was a hard one for me. I was denied the first time. I was laid off of my job 2 days after I had carpal tunnel surgery back in 2005. I had disability benefits that I had paid for through my employer and since I filed for a worker's compensation claim the company did not allow me to get the disability benefits either...and eventually they also wrongfully denied my workers' compensation claim as well. I then had no choice but to apply for disability....I was also denied the first time. But I appealed the decision and actually contacted my state representative and was soon approved. This still took several years though. </b><br /><b>It was a very stressful and hard road for me, but I did not give up. </b><br /><b></b> <br /><b>I hope that you will get approved on the first try with yours. As you probably already know though, the system is very broken....and they do everything they can to deny the benefits that people are entitled to if they are no longer able to work. You can do this yourself though online...and it is really good that your doctor is supporting this decision. </b><br /><b></b> <br /><b>I would also encourage you to check out the info under *tips* and *resources* that you can find to the right of this page. You will find some very good *tools* that perhaps you have not thought of trying. </b><br /><b></b> <br /><b>It does take a trial and error process to find the right combination of tools that will help you cope better....so hang in there and find what works for you. We are all different and what works for one may or may not work for another. </b><br /><b></b> <br /><b>Learning how to pace, pace and pace even more is so very important....we, FMers, can no longer push ourselves to the limit. Most of us are use to doing this. </b><br /><b></b> <br /><b>Dealing with the wrath of the dragon is a challenge for most of us. I hope that you will post often, ask questions, make comments and/or suggestions...</b><br /><b></b> <br /><b>Take care and good luck. </b><br /><b></b> <br /><b></b> <br /><b>MiMi </b><br /><b></b>
Booch007 responded:
Good morning,
Man you have had a plate full...Accepting the inevitable is a toughy, knowing that you now have limits to your day is a big one.
As Mimi states, the trial and error period of this problem is the hardest i think. It can break your spirit. Please know you are still so valuable even though the working world can't appreciate you right now........I have often said we define ourselves by the jobs we have...hoping you have hobbies and other interests in life to keep you busy and distracted from always thinking of this pain.
Please get into our toolbox in the resources section, there are many tricks there to help.
Hydration and eating well, supplements and movement all up to helping. IT is a difficult non lethal diagnosis and god days and bad days lay ahead. Glad you found us and the support of so many.
Good luck.........hugs as always, NancyB
Man you have had a plate full...Accepting the inevitable is a toughy, knowing that you now have limits to your day is a big one.
As Mimi states, the trial and error period of this problem is the hardest i think. It can break your spirit. Please know you are still so valuable even though the working world can't appreciate you right now........I have often said we define ourselves by the jobs we have...hoping you have hobbies and other interests in life to keep you busy and distracted from always thinking of this pain.
Please get into our toolbox in the resources section, there are many tricks there to help.
Hydration and eating well, supplements and movement all up to helping. IT is a difficult non lethal diagnosis and god days and bad days lay ahead. Glad you found us and the support of so many.
Good luck.........hugs as always, NancyB
Report This| Share this:Officially diagnosed!!Good morning,<br /> <br />Man you have had a plate full...Accepting the inevitable is a toughy, knowing that you now have limits to your day is a big one.<br /> <br />As Mimi states, the trial and error period of this problem is the hardest i think. It can break your spirit. Please know you are still so valuable even though the working world can't appreciate you right now........I have often said we define ourselves by the jobs we have...hoping you have hobbies and other interests in life to keep you busy and distracted from always thinking of this pain.<br /> <br />Please get into our toolbox in the resources section, there are many tricks there to help.<br /> <br />Hydration and eating well, supplements and movement all up to helping. IT is a difficult non lethal diagnosis and god days and bad days lay ahead. Glad you found us and the support of so many.<br /> <br />Good luck.........hugs as always, NancyB
Survivor2007 replied to Dollbug's response:
Thank you so much for your response MiMi....
I have my Vit D checked regularly...it is part of the maintenance of the breast cancer as Vit D levels can indicate risk for recurrence.
I will definately check out the resources that you suggest. I am somewhat disheartened by the time frame that it may take to be accepted for disability, but at this point, it is what I will have to deal with. I do feel very fortunate that my doc is supportive about this...and understands the process enough to start collecting my medical records in preparation for the requests for information from SS. I will be able to provide documentation of sleep issues, mental fog, depression and anxiety, and damage to my back. I also have some neuropathy. My doc is also setting me up with pain management (have done this before), and a rheumotologist. So, I am hoping that we will have a pretty complete package to submit for the disability.
Thank you again for your response.....I will be posting regularly and asking questions....and most likely seeking some support and encouragement.
I have my Vit D checked regularly...it is part of the maintenance of the breast cancer as Vit D levels can indicate risk for recurrence.
I will definately check out the resources that you suggest. I am somewhat disheartened by the time frame that it may take to be accepted for disability, but at this point, it is what I will have to deal with. I do feel very fortunate that my doc is supportive about this...and understands the process enough to start collecting my medical records in preparation for the requests for information from SS. I will be able to provide documentation of sleep issues, mental fog, depression and anxiety, and damage to my back. I also have some neuropathy. My doc is also setting me up with pain management (have done this before), and a rheumotologist. So, I am hoping that we will have a pretty complete package to submit for the disability.
Thank you again for your response.....I will be posting regularly and asking questions....and most likely seeking some support and encouragement.
Report This| Share this:Officially diagnosed!!Thank you so much for your response MiMi....<br />I have my Vit D checked regularly...it is part of the maintenance of the breast cancer as Vit D levels can indicate risk for recurrence.<br />I will definately check out the resources that you suggest. I am somewhat disheartened by the time frame that it may take to be accepted for disability, but at this point, it is what I will have to deal with. I do feel very fortunate that my doc is supportive about this...and understands the process enough to start collecting my medical records in preparation for the requests for information from SS. I will be able to provide documentation of sleep issues, mental fog, depression and anxiety, and damage to my back. I also have some neuropathy. My doc is also setting me up with pain management (have done this before), and a rheumotologist. So, I am hoping that we will have a pretty complete package to submit for the disability. <br />Thank you again for your response.....I will be posting regularly and asking questions....and most likely seeking some support and encouragement.
Survivor2007 replied to Booch007's response:
Hi NancyB.....thank you for your response. I will be looking at all the resources that the site has available. I am a bit of an information junkie....learned my research when dealing with the breast cancer.
Accepting this will definately be a challenge, for me and especially for my husband. I will be providing him with print outs of information about fibro.....he is loving and caring....but I don't know that he sees me as disabled....I have not shared a lot of my concerns and physical limitations with him. He does see that I am not full of the energy that I used to have, but bless his heart, he has been through so much with me. He is not clueless.....but this diagnosis and the ramifications of it will be a lot for us to adjust to.
In my reply to MiMi I stated that I will be posting often as I learn about this and how to handle it. For now....some time on the couch today with the heating blanket.....
Thank you and Blessed Be
Accepting this will definately be a challenge, for me and especially for my husband. I will be providing him with print outs of information about fibro.....he is loving and caring....but I don't know that he sees me as disabled....I have not shared a lot of my concerns and physical limitations with him. He does see that I am not full of the energy that I used to have, but bless his heart, he has been through so much with me. He is not clueless.....but this diagnosis and the ramifications of it will be a lot for us to adjust to.
In my reply to MiMi I stated that I will be posting often as I learn about this and how to handle it. For now....some time on the couch today with the heating blanket.....
Thank you and Blessed Be
Report This| Share this:Officially diagnosed!!Hi NancyB.....thank you for your response. I will be looking at all the resources that the site has available. I am a bit of an information junkie....learned my research when dealing with the breast cancer. <br />Accepting this will definately be a challenge, for me and especially for my husband. I will be providing him with print outs of information about fibro.....he is loving and caring....but I don't know that he sees me as disabled....I have not shared a lot of my concerns and physical limitations with him. He does see that I am not full of the energy that I used to have, but bless his heart, he has been through so much with me. He is not clueless.....but this diagnosis and the ramifications of it will be a lot for us to adjust to.<br />In my reply to MiMi I stated that I will be posting often as I learn about this and how to handle it. For now....some time on the couch today with the heating blanket.....<br />Thank you and Blessed Be
Booch007 replied to Survivor2007's response:
" But I don't think he sees me as disabled"
Do you see yourself as disabled now? Remember as with cancer YOUR mind set is so important.
Can you switch that hat for a bit.....I stayed in anger and fight for so long. I told the doc, no way I am staying like this....you are wrong that this is forever..
I told her if i take my boxing gloves off, I will fold. I still feel that way. I fight it everyday. I feel 90 in the morning and no matter how bad (unless a flare) I move and get out and up*..
Now I still work and that is a major distraction (my strongest med) that is why I asked about hobbies to get you away from yourself.....The mind is so powerful a tool.
I will share this past window I had. I started with decorating my home as I do each year it is momentous a feat. I got my trigger point shots but they didn't work as I went to the office after and did phone work (so bad for my neck, I have no headset)...SO. Now the holiday came and I had 2 days of company and set up and clean after...(got more help from my husband then usual BUT it is so much on us)
I got very festered....to the point of lower back pulling to bulge a disk and headaches and I couldn't lay in bed...but even the recliner tool didn't work I was sitting tipped to the right to sleep.
BAD...I finally called the neurologist crying with the mess I was in . My trigger point injections weren't for 3 more weeks !
Long story short...I was given her lunch time for shots (they are so good to me) I asked my husband (DH:dear husband) to mark my zones for the doctor so the session passes quicker and she gets all that I need.
WELL, 60 sites were positive from shoulders to waist and the waist had "active points" as apposed to latent ones. This was why the back was so bad. This being without the neck shots of usual. My husband was so upset when he saw the quantity I was dealing with ! But then I just said to him...now you know why I am planted and can't do much..
I got my session and am so much better. He also got to see how fragile I was during the efforts he was asking me to perform.
Now I have CMP cousin to FM...we share alot though. I use a book called "FM and Chronic Myofascial Pain"; a Survival Manual by; Dr Devin Starlanyl 19.99. I implore you to purchase it. (amazon.com) It gives you therapy to help yourself and tools to move forward.
It is great to teach your husband too. Dr Pellegrino here also wrote some books that are good as he is a doctor and a patient he is enlightned like no other. He is Physical Medicine and rehab.
I have always stayed with neurology as my symptoms were neuropathy like due to impingement of nerves from these muscles. I am trigger point syndrome and not tender zones. I do have pain and motion issues and flare just like all of you. The doc says this is all FM but in my book we are separate and I feel i am separate.
I am an ICU nurse by background an am now with the attendings in the office and I have to say since I went to the office I have tripled what I do and the responsibilty I take on.
Alot here are type A people....as I bet you are, so you will push forward. So again...try to GET MAD not SAD...don't fold in and let this mess take more of you then needed. I was put on a detox diet of GREEN and MEAN. All green veggies with meat chicken and fish NOTHING else and all water only..It changed my muscles for the good...keep trying and don't sit still. It is so important that you move eveyday.
OK long winded and hope not boring and all said with love and good intention..................welcome again and hopes for a better day in the future. Hugs, Nancy B
Do you see yourself as disabled now? Remember as with cancer YOUR mind set is so important.
Can you switch that hat for a bit.....I stayed in anger and fight for so long. I told the doc, no way I am staying like this....you are wrong that this is forever..
I told her if i take my boxing gloves off, I will fold. I still feel that way. I fight it everyday. I feel 90 in the morning and no matter how bad (unless a flare) I move and get out and up*..
Now I still work and that is a major distraction (my strongest med) that is why I asked about hobbies to get you away from yourself.....The mind is so powerful a tool.
I will share this past window I had. I started with decorating my home as I do each year it is momentous a feat. I got my trigger point shots but they didn't work as I went to the office after and did phone work (so bad for my neck, I have no headset)...SO. Now the holiday came and I had 2 days of company and set up and clean after...(got more help from my husband then usual BUT it is so much on us)
I got very festered....to the point of lower back pulling to bulge a disk and headaches and I couldn't lay in bed...but even the recliner tool didn't work I was sitting tipped to the right to sleep.
BAD...I finally called the neurologist crying with the mess I was in . My trigger point injections weren't for 3 more weeks !
Long story short...I was given her lunch time for shots (they are so good to me) I asked my husband (DH:dear husband) to mark my zones for the doctor so the session passes quicker and she gets all that I need.
WELL, 60 sites were positive from shoulders to waist and the waist had "active points" as apposed to latent ones. This was why the back was so bad. This being without the neck shots of usual. My husband was so upset when he saw the quantity I was dealing with ! But then I just said to him...now you know why I am planted and can't do much..
I got my session and am so much better. He also got to see how fragile I was during the efforts he was asking me to perform.
Now I have CMP cousin to FM...we share alot though. I use a book called "FM and Chronic Myofascial Pain"; a Survival Manual by; Dr Devin Starlanyl 19.99. I implore you to purchase it. (amazon.com) It gives you therapy to help yourself and tools to move forward.
It is great to teach your husband too. Dr Pellegrino here also wrote some books that are good as he is a doctor and a patient he is enlightned like no other. He is Physical Medicine and rehab.
I have always stayed with neurology as my symptoms were neuropathy like due to impingement of nerves from these muscles. I am trigger point syndrome and not tender zones. I do have pain and motion issues and flare just like all of you. The doc says this is all FM but in my book we are separate and I feel i am separate.
I am an ICU nurse by background an am now with the attendings in the office and I have to say since I went to the office I have tripled what I do and the responsibilty I take on.
Alot here are type A people....as I bet you are, so you will push forward. So again...try to GET MAD not SAD...don't fold in and let this mess take more of you then needed. I was put on a detox diet of GREEN and MEAN. All green veggies with meat chicken and fish NOTHING else and all water only..It changed my muscles for the good...keep trying and don't sit still. It is so important that you move eveyday.
OK long winded and hope not boring and all said with love and good intention..................welcome again and hopes for a better day in the future. Hugs, Nancy B
Report This| Share this:Officially diagnosed!!" But I don't think he sees me as disabled"<br /> <br />Do you see yourself as disabled now? Remember as with cancer YOUR mind set is so important.<br /> <br />Can you switch that hat for a bit.....I stayed in anger and fight for so long. I told the doc, no way I am staying like this....you are wrong that this is forever..<br /> <br />I told her if i take my boxing gloves off, I will fold. I still feel that way. I fight it everyday. I feel 90 in the morning and no matter how bad (unless a flare) I move and get out and up*..<br /> <br />Now I still work and that is a major distraction (my strongest med) that is why I asked about hobbies to get you away from yourself.....The mind is so powerful a tool.<br /> <br />I will share this past window I had. I started with decorating my home as I do each year it is momentous a feat. I got my trigger point shots but they didn't work as I went to the office after and did phone work (so bad for my neck, I have no headset)...SO. Now the holiday came and I had 2 days of company and set up and clean after...(got more help from my husband then usual BUT it is so much on us) <br /> <br />I got very festered....to the point of lower back pulling to bulge a disk and headaches and I couldn't lay in bed...but even the recliner tool didn't work I was sitting tipped to the right to sleep.<br />BAD...I finally called the neurologist crying with the mess I was in . My trigger point injections weren't for 3 more weeks !<br /> <br />Long story short...I was given her lunch time for shots (they are so good to me) I asked my husband (DH:dear husband) to mark my zones for the doctor so the session passes quicker and she gets all that I need.<br /> <br />WELL, 60 sites were positive from shoulders to waist and the waist had "active points" as apposed to latent ones. This was why the back was so bad. This being without the neck shots of usual. My husband was so upset when he saw the quantity I was dealing with ! But then I just said to him...now you know why I am planted and can't do much..<br /> <br />I got my session and am so much better. He also got to see how fragile I was during the efforts he was asking me to perform. <br /> <br />Now I have CMP cousin to FM...we share alot though. I use a book called "FM and Chronic Myofascial Pain"; a Survival Manual by; Dr Devin Starlanyl 19.99. I implore you to purchase it. (amazon.com) It gives you therapy to help yourself and tools to move forward.<br /> <br />It is great to teach your husband too. Dr Pellegrino here also wrote some books that are good as he is a doctor and a patient he is enlightned like no other. He is Physical Medicine and rehab.<br /> <br />I have always stayed with neurology as my symptoms were neuropathy like due to impingement of nerves from these muscles. I am trigger point syndrome and not tender zones. I do have pain and motion issues and flare just like all of you. The doc says this is all FM but in my book we are separate and I feel i am separate.<br /> <br />I am an ICU nurse by background an am now with the attendings in the office and I have to say since I went to the office I have tripled what I do and the responsibilty I take on.<br /> <br />Alot here are type A people....as I bet you are, so you will push forward. So again...try to GET MAD not SAD...don't fold in and let this mess take more of you then needed. I was put on a detox diet of GREEN and MEAN. All green veggies with meat chicken and fish NOTHING else and all water only..It changed my muscles for the good...keep trying and don't sit still. It is so important that you move eveyday.<br /> <br />OK long winded and hope not boring and all said with love and good intention..................welcome again and hopes for a better day in the future. Hugs, Nancy B
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