Not yet properly diagnosed

Hi everyone. I just want to introduce myself. My DR has suspected for about six years that I may have fibro. I also have trigeminal neuralgia so that has taken center stage until recently with my health. I am awaiting an appointment with a new neurologist for more information.
I am a moderator on the Ben’s Friends page for TN and we are such an amazing source of support for each other.
I have so many questions and find a lot of descriptions of fibro to be confusing and vague. I am looking forward to learning lots from everyone here.
Jane

Welcome to Living with Fibro! I am sure you will find lots of great information and support here. If you haven't already, please take a look at the Fibro 101 guide which offers great general information. Please feel free to ask all the questions you want, Fibro is a tricky thing that "morphs" (my term) as it wants to. The thing I have learned the most over the many years since diagnosis is to just never quit trying to find things that help with symptom relief. From time to time, what works for me will stop (which is understandably discouraging) but I have learned to just get back up and keep trying other things. Generally, the non-med stuff works more effectively for me long term than medication, but everyone is different. I also have a lot of neuropathy (not TN luckily) so I understand a little about nerve pain. Anyway, glad you joined and I am sending you hugs!

My first experience with a neurologist when first diagnosed was him giving me several prescriptions and then telling me to b careful because they ate addicting! Needless to say, I was too afraid to ever take them. Over time I found MOVING my body and trying not to let stiffness set in kept the pain at bay. I can’t handle heavy cardio…feels like the lactic acid builds up n my muscles n I feel like the flu. I can do cardio slowly and I can weight train if I rest between sets. HANDS DOWN, going into the sauna to relax n stretch muscles after cuts post workout soreness in half. I wish I had a sauna in my house! It sooth the pain so much! Good luck to you! On a really bad day, I take methylcarbonal. Opiate pain meds make me too sick…

Thank you Auburnm

I did read through the 101 info and found it to be very helpful. I am gathering info and trying to learn as much as I can for my upcoming appointment. I am not sure what to expect as help with my nerve disease is very hard to find. I am hoping that the process for this is a bit easier but I am gathering that may not be the case.

Jane

Auburnm said:

Welcome to Living with Fibro! I am sure you will find lots of great information and support here. If you haven't already, please take a look at the Fibro 101 guide which offers great general information. Please feel free to ask all the questions you want, Fibro is a tricky thing that "morphs" (my term) as it wants to. The thing I have learned the most over the many years since diagnosis is to just never quit trying to find things that help with symptom relief. From time to time, what works for me will stop (which is understandably discouraging) but I have learned to just get back up and keep trying other things. Generally, the non-med stuff works more effectively for me long term than medication, but everyone is different. I also have a lot of neuropathy (not TN luckily) so I understand a little about nerve pain. Anyway, glad you joined and I am sending you hugs!

Hi Susan,

I have become very frustrated with Drs for the same reason. I have been prescribed every anti-depressant and every anti-convulsant there is. Not to mention pain killers, which really don't help with anything anyway. I have been sick for a few years with my facial pain and have seen countless Drs and specialists for that.

I have a lot of nerve pain and muscle pain. My biggest problem has been my neck. I am in physio and get acupuncture every single week and that helps some.

I work full time and have a young family so at this point I am really just exhausted! Exercise of any kind isn't really happening because I just want to lay down. I think I am also really going through a lot of emotions with this. I have already been through a lot with trigeminal neuralgia and just cannot believe that now my whole body is freaking out!

I am a big believer in natural treatment but there are times that I wish a pill would fix things. That's the problem though right? Is they don't fix it anyways. I am just on a low dose of Nortriptyline. I have been on Amitriptyline and have tried Lyrica and Cymbalta and don't want to go that route again.

I am trying hard to take care of myself.

Jane

Susan said:

My first experience with a neurologist when first diagnosed was him giving me several prescriptions and then telling me to b careful because they ate addicting! Needless to say, I was too afraid to ever take them. Over time I found MOVING my body and trying not to let stiffness set in kept the pain at bay. I can't handle heavy cardio.....feels like the lactic acid builds up n my muscles n I feel like the flu. I can do cardio slowly and I can weight train if I rest between sets. HANDS DOWN, going into the sauna to relax n stretch muscles after cuts post workout soreness in half. I wish I had a sauna in my house! It sooth the pain so much! Good luck to you! On a really bad day, I take methylcarbonal. Opiate pain meds make me too sick....

Hello Justjane,

You will already know how supportive and helpful this community is! So just wanted to add my two pennorth. You are right about help being hard to find, just like your TN, sadly. Same as you have stated for the meds, many are not that effective, and as I discovered when I attended a pain clinic, they usually only reduce 30% of pain ( I was shocked too ). The side effects are often not worth putting up with. Consequently I take no medication for pain, but I do understand they might work better for some, we are all different!

My position is that I have only had this for about 4 years, so I also am still learning and have by no means got it right yet! I have learnt that constantly fighting it and trying to find a cure is exhausting. I know some people spend a lot of money on various protocols, which don't ,work for everyone, and none proven as yet.I think treating the symptoms, working with your Doc is a positive thing, find a great Doc! Often being 'in the battle' is exhausting, acceptance(mindfulness works well here)

I have found that getting 'out of the battle',can be freeing.

I am sorry this post has gone on, you may have already fallen asleep! While I can see that you are a younger person, young family and wanting to continue working full-time, and many do and I so admire them! I am older, and was reaching retirement age, did continue to work part-time for 3 years. So when I had to give up working full-time I took in a lodger, just saying, as sometimes you have to be a little creative and make changes, so you can look after you. I wish you well

Take care, Anne