Thanks for telling me - the patient!

[HopefulHannah]

Hi all,

I am new to the forum and am going through a hard time. To sum it up, I had some severe stress in Nov 2013 and in Jan started having back pain and now it's everywhere. If its not a major muscle spasm it's skin sensitivity, depression/anxiety, IBS, or brain fog. Or all of them at once.

The reason I am posting is because nobody told me. It just casually came up in conversation with my pain doctor (a spine specialist, not a rhuemie). I was floored since he never mentioned it. Then I received my medical records from my primary care physician in which she also casually referenced my fibro. Again.....these people have basically diagnosed me and forgot to tell me. Emotionally, I am scared. I am in between doctors and jobs as I just relocated and I am also running out of medication (nucynta and vicoprofen as well as meloxicam and robaxin).

I am on a waiting list to see a new local pain specialist here in CA but the office manager has to 'approve' me before I actually get an appointment. So now I am just waiting - for answers, medication, and trying to figure out how to reduce stress when I could not be more stressed out. It's really hard to take good care of yourself when you don't feel good. Daily I feel about 60% on waking up and if I am lucky I get to 80% but it takes hours to get there. I am also staying with family yet still feel really isolated. I don't think anyone really gets it. I don't even know if I get it.

Thanks for reading.

 

[mariposa]

The reason I am posting is because nobody told me. It just casually came up in conversation with my pain doctor (a spine specialist, not a rhuemie). I was floored since he never mentioned it. Then I received my medical records from my primary care physician in which she also casually referenced my fibro. Again.....these people have basically diagnosed me and forgot to tell me. Emotionally, I am scared. I am in between doctors and jobs as I just relocated and I am also running out of medication (nucynta and vicoprofen as well as meloxicam and robaxin).

Welcome to the forum, HopefulHannah. I can't even imagine how or why a doctor would forget to tell someone what their diagnosis is.... that is so beyond understanding!

I hope that you'll soon be able to see someone who will help you and get those medications refilled if the new doc chooses to keep the same meds.

 

[katydid]

I had a Dr once "forget" to tell me that I had a mass in my pituitary gland for over a year. Actually his PA ended up telling me on accident... The pa said "oh well Dr so and so must have thought it wasn't a big concern at that time.. .." I was furious. I can totally relate and know how you must feel. Look at it this way at least you finally know. There's a reason why you have all these symptoms and pain..... Things will work out. Try not to stress because you will make your pain worse.... Good luck and remember everything happens for a reason.

 

[kmpisces]

Yes it is odd that they did not tell you. I actually had the same thing happen. I was denied medical coverage and they said because of my fibro. Then I asked my doctor and he said I do have Fibromyalgia. It seems strange they do not want to work to help us with our fibro though. I just do not understand some doctors. Needless to say I got another doctor.

 

[1sweed]

HopefulHannah,
It is a bit odd they would forget to tell you, but I have had doctors mention things to me and then act surprized when I ask them what they were talking about. But worry and stress will not help you now. I think doctors don't know how to treat it and know there is no cure so they kind of skim over the details of the diagnosis hoping we won't notice. Not fair, but hey they might be scared your going to freak out.

So you have what we have. There is no cure, but there are plenty of good management skills for you to learn. Start reading the back posts about fibro pain management and things to improve your sleep. Some think that sleeping does not have much to do with pain and other symptoms, but in truth it means a lot.

When we don't sleep well, we get nervous and upset easier and tempers flare. We have a hard time relating to others, mostly family. It can make brain fog worse and other symptoms as well. So read about what helps your muscles to relax so you can sleep. The other biggy is pain. It is hard to think straight when everything is throbbing. You can't sit for long or lay flat for long, or stand up long periods of time. So what to do. Take your pain medications on time everyday. Take baths in warm (not hot) water, if you have a tub use epson salts in the water it helps calm and relax muscles. Use a full length massage mat that has heat, to relax muscles and pinpoint bad spots. Look for a bed pad (3 inch thick) to provide extra cushioning for your sore muscles. Try to aviod stress.

If depression gets you down go see a mental health counseler. If you can not afford private practice then most towns and cities, provide mental health clinics that operate on a sliding scale, meaning they go by your income and are cheaper. So don't say you can not afford to go. This is a time when you need someone to talk to that is not related and can help calm your fears. It is good to have someone who can help you see things in a more positive light and should you ever go for disability can help with that as well.

There are many members going through what you are right now and can provide the support and answers you need. So get busy and ask more questions and we will help you find the answers.

 

[HopefulHannah]

HopefulHannah,
It is a bit odd they would forget to tell you, but I have had doctors mention things to me and then act surprized when I ask them what they were talking about. But worry and stress will not help you now. I think doctors don't know how to treat it and know there is no cure so they kind of skim over the details of the diagnosis hoping we won't notice. Not fair, but hey they might be scared your going to freak out.

So you have what we have. There is no cure, but there are plenty of good management skills for you to learn. Start reading the back posts about fibro pain management and things to improve your sleep. Some think that sleeping does not have much to do with pain and other symptoms, but in truth it means a lot.

When we don't sleep well, we get nervous and upset easier and tempers flare. We have a hard time relating to others, mostly family. It can make brain fog worse and other symptoms as well. So read about what helps your muscles to relax so you can sleep. The other biggy is pain. It is hard to think straight when everything is throbbing. You can't sit for long or lay flat for long, or stand up long periods of time. So what to do. Take your pain medications on time everyday. Take baths in warm (not hot) water, if you have a tub use epson salts in the water it helps calm and relax muscles. Use a full length massage mat that has heat, to relax muscles and pinpoint bad spots. Look for a bed pad (3 inch thick) to provide extra cushioning for your sore muscles. Try to aviod stress.

If depression gets you down go see a mental health counseler. If you can not afford private practice then most towns and cities, provide mental health clinics that operate on a sliding scale, meaning they go by your income and are cheaper. So don't say you can not afford to go. This is a time when you need someone to talk to that is not related and can help calm your fears. It is good to have someone who can help you see things in a more positive light and should you ever go for disability can help with that as well.

There are many members going through what you are right now and can provide the support and answers you need. So get busy and ask more questions and we will help you find the answers.

Thank you for your response!

I do have a question about sleep. I have been remembering ALL of my dreams for the last few weeks. This leads me to believe that I am not actually sleeping as deeply as I should be despite my medications to sleep. Do you know of a way to get 'deeper' on the REM scale? Also, I have started pitocin shots and they seem to only last the day. Is that normal?

Thanks!

 

[1sweed]

I can not answer about the pitocin shots as I never hear of them before. I have heard that remembering your dreams can be a good thing as most people do not remember a thing. I enjoy dreaming and hate when I am awakened by the phone ringing or needing a bathroom break, before my dream is finished. So I am going to let others make comments on this as well, because I like remembering my dreams and find them to be informative as well as relaxing.

 

[Trellum]

Hi all,

I am new to the forum and am going through a hard time. To sum it up, I had some severe stress in Nov 2013 and in Jan started having back pain and now it's everywhere. If its not a major muscle spasm it's skin sensitivity, depression/anxiety, IBS, or brain fog. Or all of them at once.

The reason I am posting is because nobody told me. It just casually came up in conversation with my pain doctor (a spine specialist, not a rhuemie). I was floored since he never mentioned it. Then I received my medical records from my primary care physician in which she also casually referenced my fibro. Again.....these people have basically diagnosed me and forgot to tell me. Emotionally, I am scared. I am in between doctors and jobs as I just relocated and I am also running out of medication (nucynta and vicoprofen as well as meloxicam and robaxin).

I am on a waiting list to see a new local pain specialist here in CA but the office manager has to 'approve' me before I actually get an appointment. So now I am just waiting - for answers, medication, and trying to figure out how to reduce stress when I could not be more stressed out. It's really hard to take good care of yourself when you don't feel good. Daily I feel about 60% on waking up and if I am lucky I get to 80% but it takes hours to get there. I am also staying with family yet still feel really isolated. I don't think anyone really gets it. I don't even know if I get it.

Thanks for reading.

Hi Hannah, I'm so sorry to hear you're going tru this as well. I relate a lot, I'm also living a stressful time, at times I don't even know how I manage to keep things under control. One of the things that is really helping me right now is taking my vitamin B complex. Some weeks ago I was unable to sleep for more than a couple of hours, it's been 2 wonderful nights ever since I started taking this amazing vitamin B complex and I've been sleeping like a baby.

Don't worry, it's always a very shocking and stressing time when you just get diagnosed. As the time passes you will feel better, I do feel islosaled as well (more often that I'd like to admit). I'm suffering from chronic depression and anxiety, but I'm not taking meds for that. Working out and taking that vitamin B complex seems to be helping me a lot.

Have you tried watching ASMR videos? I've been watching a lot of those, I must say those videos really relax me. If you are like me, you will enjoy the ones that have soft sounds in them rather than the whispering ones.

Best of luck, Hannah!

 

[rollinloud]

Welcome. It is such a vague and generic condition that a lot of Doctors struggle to diagnose anyone with fibromyalgia at least for a while. It seems sort of like a catch all when no other diseases or sicknesses can be identified. So, it isn't completely the Doctor's fault. I wish you luck.