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Fibro veteran. ... but new symptoms, can anyone relate? suggestions?

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Posted 1/7/2015 1:59 AM (GMT 0)
Hi All,
This is my first post since my introduction. I normally just search for whatever is bothering me at the time and read the posts. This time decided to just skip that step and post my symptoms and hope I can get some feed back...PLEASE!!! Been dealing with fibro for many years and have gotten fairly good at going with the flow. However it's been a really rough road this past year...back to not knowing what's fibro and what's not. Visits to doc more then normal and not believing when they say it's just a flare. Already been through a few tests....upper n lower G.I.'s nuclear stress n couple months ago halter monitor....you guessed it all normal. Anyway a year ago had my bottom teeth out (uppers out 7 yrs ago) anyway had trouble with lowers right from the start and been down hill since. Don't know if it has anything to do with my current issues I just try to go back and make a connection to when things got bad. So of course first thing to change was diet...still can't wear lower plate and after almost 5 grand can't afford to do anything about fixing it at this time. Since then it's been intermittent chest pain, stomach cramps, horrible leg and back pain. I have been prescribed so many different meds which I don't take half of because I hate mixing all that stuff plus the side effects are undesirable. So as time marches on these thins are no longer intermittent they have become regular visitors in my daily life. I no longer look forward to things that I enjoyed because just the thought of how I'm going to feel after is frustrating. Over the weekend I thought for sure my time was up....I felt sick to my stomach, neck and upper back hurt, the worst thing was the pain in my left arm (non radiating)just above the elbow, felt like someone had squeezed it so hard and forgot to let go. I tossed around going to E.R. and decided not to just don't want to go through all that poking and prodding and wasting of money. Not to mention those crazy person looks you get. Been there done that have no desire to repeat unless I have no choice. Anyway the arm pain went away thank the good Lord. I'm obviously still here so my time wasn't up. I'm still dealing with stomach cramping (that General area) and upper back pain, neck pain gone also. There are other issues but they are minor. So there you have it in a nut shell...well a big nut shell. Anybody have thoughts since I'm pretty sure some of you have had similar experiences. I appreciate any feedback. If you got this far...lol...thanks for taking the time to read this.

Post Edited By Moderator (Michael1968) : 1/7/2015 10:05:17 AM (GMT-7)

Posted 1/7/2015 3:32 PM (GMT 0)
Any chance you have a stomach virus on top of other issues?

There are a lot of bugs around this time of year..and anything on top of fibro can be hard to deal with..we are just getting over a flu like illness...some with fibro say they have flu like symptoms, but to me that sounds more like cfs...
Posted 1/7/2015 5:09 PM (GMT 0)
Hi Eaglesnestpa

I gave your post a subject for more views and more help. I can relate and will be along this evening with my thoughts.

Have a great day
Michael
Posted 1/7/2015 5:26 PM (GMT 0)
In some ways the things you are working with remind me of the friustration I have had over the last few months. I lost my primary this last year due to illness. I am looking for one person to help me make decisions and manage my care. There are so many interactions thqt it is difficult to keep straight. I made friends with my pharmacist and have spent time picking their brain for interactions.

I have a couple of suggestions to look at but I am not sure if they relate. My husbsnd has Congestive Heart Failure and Hypertension. A few of your symptoms sound like that. He had horrible pressure in his face and nosebleeds (which I know you didnt mention), but the radiating pain and stuff sound like that a bit. Not being a diagnostician I may be completely off, but worth a check.

A lot of Fibro people have Irritable Bowel of some sort. i have IBD ( with diarrhea), but my daughter has it with constipation. Plus the central nervous sensitization we get causes a lot of things to go crazy and feel overwhelming.

The issue I have been having with pain lately seems mildy unmanageable. I figured out that some of it was related to edema in all of my limbs. I started using my TENS device on the limbs on Ems Mode and it is helping. I also implemented a lot of arm and limb stretches at different angles. My doc also has me on a diuretic. There is still underlying pain there, but it is more manageable and I don't feel so blown up that I want to cry. I have also lost arm width due to that. I just noticed last night that my oven gloves were no longer skin tight on my forarms.

I hope these suggestions help. I hope strongly that yu can find the one personyou need tohelp you manage this. I understand your frustration. I spent the month of December struggling with depression due to the inability to find someone tonhelp me sort throughh the different pains. I yanked myself out of it, but feel like it could have been avoided if I didnt fight what you are going through withpeople looking at me like I am making stuff up. It doesnt help when I forget things and dont remember to come to the office with everything written out at once. I sound like I am making it up.

I am startiong this year trying to be a better advocate for myself, We all have to stick together. Sometimes we arethe only ones who "get it".
Posted 1/8/2015 5:51 AM (GMT 0)
Hello, eaglesnestpa

I like you have been dealing with fibro for many years. 15 to be exact. I also like you had it to a very manageable level. Pain everyday but it was mostly my legs. 2 yrs ago, it went crazy again. It is back like it was in the very beginning with pain in legs lower back hips buttocks and so on and so forth. I had underwent a great deal of stress 2yrs ago with the loss of my job which I loved (not because of fibro). Stress is what made it go crazy again and brought back all the original symptoms from when I first developed it.

This time.....like you, I have new symptoms that Drs. have no answer for. Example My Elbows kill me now. They hurt and have sore spots on them when pressed. It also hurts in the bends of my arms and biceps into my forearms and the ring and little finger of each hand get numb in my sleep every night and I have to shake them. I have had x rays NOTHING EMG to check for ulnar nerve damage NOTHING My Dr. says it is probably tendinitis. I disagree. I find it hard to believe tendinitis would last for 2 years!!!! My next step is an Ortho for hopefully an MRI. My other symptom is RED HOT EARS!!!! I can not touch them without them turning bright red and feeling extremely hot. I asked my DR, My Rheumatologist and they say, Hmmm........ no idea what could be causing that. They Know it is happening because I show them what happens when I touch them. That is weird... no idea they say. BOY THAT IS COMFORTING.

Now with the cold weather here in Ohio the all over pain has jumped up like crazy. So....I truly understand your confusion and your frustration. I really really do. I do believe that you have done all the right things as far as getting things checked out, and it is even more frustrating when nothing is wrong. (not that you want it to be, but you know what I mean)

Do you think yours could have been brought on by the stress of the dental issues? I mean it seems logical to me that it is quite possible. For the bottom plate have you looked into the rod inserts into the bottom gum in which the plate snaps onto for a secure fit? I know you said you cant really afford to have them fixed at the moment, but something to look into. Without bottom teeth in all the time, Im wondering if that is causing your food to not properly be digested correctly which could possibly lead to the GI stomach issues.

If this was a really big stressor for you then certainly there must have been anxiety involved which can also cause heart palpitations , stomach upset....nausea and anxiety certainly causes increase body pain which can explain why you hurt in different places now as well. These are just my thoughts on this because our stories seem similar with having a good handle on it and then suddenly new symptoms that have become present.

The only thing you can really do now is to assure yourself that you have felt better in the past and there is no reason or no proof that you will not feel that way again. If it happened once certainly it can happen again.
If your tests are coming back normal then you have to try and tell yourself that you will feel better again. Try not to dwell on the new symptoms and make scary scenarios and what if thinking a part of your day. fill yourself with positive self talk and distract yourself as much as possible. I agree with you on the meds too. Only take what you know is helping and do not waste your time or money on the ones you know are not helping. The fix is sometimes worse than the problem with todays big pharmacy.

I do hope that you start feeling better and please know that I and others totally get where you are coming from. Fibro is a frustrating painful misunderstood stupid hot mess of a condition. Just try and stay positive and keep on keeping on and think about the anxiety aspect of what you have been dealing with. It might just be that.....anxiety. Please keep posting as well, we really do care.

Michael
Posted 1/8/2015 1:56 PM (GMT 0)
Michael -

Have they looked at you for CRPS (Complex Regional Pain Syndrome)? I have had it ever since a specific surgery where they had to rebuild my ankle. It used to be called RSD (Reflex Sympathetic Dystrophy), but the diagnosis for it has grown and specified. One of the very specific markers for it is unexplained hot and cold spots on your body. I battled this for a while. I would be sitting still in front of the TV .... not moving and suddenly one spot on my leg would grow hot to the touch. As we keep our house quite cool, the skin right next to it would be cool to the touch.

The reason I ask is that they were able to minimize the effects of this for me with a simple addition of some blood pressure medicine. I was already taking a very mild one (Lisinopril), but my pain NP who was a cardiac ICU nurse added Verapamil. That made the hot/cold spots very rare and very mild. Until the Fibro got pretty aggressive (the two have similar and yet some very different symptoms), I was going through a 1 month prescription for Tramadol only every 3-5 months. Both diseases have central nervous sensitization, but CRPS is getting more defined from it's original trashcan diagnosis. We don't have a forum here for CRPS/RSD, but I think most of those folks go to the Chronic Pain forum.
Posted 1/8/2015 3:09 PM (GMT 0)
Just a quick ty...Will return later, have some things to get done. Also prefer my computer to this kindle (takes to long...lol) for posting!
Posted 1/8/2015 7:39 PM (GMT 0)
Hi Eaglenestpa, I am a new member too.  I have just posted several messages about what has dramatically helped me with fibro pain, natural remedies.  Also just posted my first topic mindfullness, the real healer of with pain.  Maybe something there might be helpful to you.  Who knows??  We're all connected at the deepest level, the computer is just a tool of the one spirit in all.  I hope you find the answers you need and don't give up the search.  Barbara in NZ
Posted 1/8/2015 11:39 PM (GMT 0)
Hi Eaglesnestpa,

Welcome to the fibromyalgia forum. I too had my fibromyalgia at bay... The pain and the fatigue. Right now the weather has been awful and cold where I live and I haven't been able to get out and walk and my pain is at an all time high. I have recently gone off of pain medications too and I think that has a lot to do with it, but I was managing with out them for awhile.

I hope you can get sorted out what is what. I hope you find some answers. I pretty much roll with it myself. One day at a time, and yes, mindfulness helps a lot!!! I think fibromyalgia taught me that because I had to start taking it one day at a time. I just never knew how I was going to feel at any given time.

Take care and do keep posting...

Hugs, Karen...
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