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Just trying to get more info on FMS and getting diagnosed, etc.
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nowthis posted:
I have been on the Pain Management forum for quite some time as I deal with Chronic back pain as well as leg pain associated with herniated discs at L4/L5, L5/S1.

Over the past couple years it has gotten worse, but over the past 6 months, it has REALLY became worse to where my meds some days just hardy touch the pain and it makes it extremely hard to work! Especially my legs! They just hurt so bad. Here are some of my symptoms that I have noticed recently:

Leg pain has increased significantly, I usually have epidurals every 4-6 mo or so...had one two weeks ago & it did NOTHING!!!

I feel SO SORE some days in areas where it felt like I ran a marathon or just went to the gym & hit it HARD!

Ex. Today I woke up and my stomach is just SO SORE, my butt is sore, I have an area on the back of my leg/thigh where it feels like i took a 2 mile run and it just hurts to touch it! I have an area on my jaw that feels like I was in a bar brawl! I have another area on the top of my chest that feels like my jaw! It's at the top, about two inches below my neck, I'm assuming that's around the top of my breast plate or breast bone?

I get headaches and, my neck is sore a lot, I have this spot on my forearm that comes and goes that yet again feels like I just worked out & it just so tender to the touch!

I have horrible bowel issues, most of the time I'm constipated, then some days I'll be normal and an hour later I have diarrhea!

Oh and I also have horrible problems sleeping! It's really hard for me to sleep, I can take ambien, valium, lunesta, temazepam, whatever, it rarely works & I always feel exhausted no matter how much sleep I get, I'm always tired!

I hope I didn't jump around too much and my post gave lots of info....I did take the test on webmd and it said their is a good chance I do have Fibromyalgia but of course, I know I have to see a DR....I have an appt with my Pain Management Dr a week from Friday to follow up as I went back in to see him last week b/c my meds just aren't doing it and I take fairly heavy pain meds....I am on 15mg oxycodone(immediate release) 4x/day and 50mcg Fentanyl patches/72 hrs that I will have changed to 48 when I go back bc it doesn't last 72 hours(recently switched from Oxycontin b/c it just wasn't doing it anymore.) and I take Soma 350 3x/day.

I am really starting to go crazy over this b/c it's gotten to the point a lot of times during the day to where all I can think about is "Damn I'm Hurting, Damn I'm hurting, GOD Why won't these meds help!" and It's getting to the point to where it's driving me CRAZY some days and it's hard to concentrate at work b/c I can't get the dang pain off my mind!!!!

I'm really hoping my Pain Management Dr will help me out with this process and not try to refer me to a Rheumatologist or someone else BUT he is a NEURO, but then again he does Pain Management, so IDK....I also have an MRI tomorrow(Friday 2/14/14) to see if anything has changed to make my back/leg pain worse and to see if he wants to do surgery.

Any info, recommendations, or just general info, or even questions for me would be greatly appreciated!!!!

Thanks!

Johnathan
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nowthis responded:
I also wanted to note...I had weight loss surgery(vertical sleeve gastrectomy) 7/25/12 b/c I was 275(170 now), always had weight issues that got a lot worse the last few years and I had really hoped and thought (The Dr's did as well) that losing the weight would help with my pain and energy level but NO...didn't reduce my pain A BIT! It's just continued to get worse in more places!
 
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missist responded:
Hi Johnathan. A neuro is probably the best for you. Should be able to do a simple evaluation--sounds a lot like fibro--pretty classic to start with other pain.

That's a lot of meds--hope you can get surgery- if you do-- it should help with the immediate back issue--but fibro--once you have it, you have it.

There aren't quick fixes but there are some things that can help lessen it. Not so easy to put it all in one post though.

One thing I know is I have to pace myself-and move around some--but not over do. If you have a desk job-- don't just sit all day for sure.

some of the gutt issues may have to do with your meds-- so that will need to be looked at- although fibro can also cause that kind of thing too.

I would wait and see what your dr says before jumping to being sure it is fibro--but if it is-- be sure to hang around here and keep asking questions. there are lots of folks with experience that chime in and help.
Will pray for you!
Mary
 
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missist replied to nowthis's response:
oh-- the weight loss surgery can also cause gutt problems--so be sure to ask about that too.

really hope you find some answers, life shouldn't be all miserable. Most of us find some help in time, and manage better, none are cured but we do manage better.
Mary
 
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missist replied to missist's response:
Just re-reading this in morning--I know others will chime in sometime today.. in fibromyalgia all the things you have mentioned are definitely possible/likely. The thing that is striking me is feeling like you hit the gym hard-- thank you for putting that in words for me--I have that too-- it travels--currently for the past year and a half for me it has also been legs and butt--I also have L5/S1 issue it is bulging and pressing along the thecal sac http://en.wikipedia.org/wiki/Thecal_sac

Obviously it could be the disc causing this issue--but more and more I am thinking it is my old friend fibromyaliga along with what is called 'myofascial pain syndrome' a problem in which there are trigger points that refer pain via muscle fibers ( I think I'm describing this right) I have literally got little painful lumps under the skin on my thighs that hurt if you press on them. dozens probably. I think it is like little muscle knots. I feel as if I have a muscle burn from the gym--especially if I have been sitting long or lying down--so when I get up in the morning it is hard to walk I use a cane for a little bit-- to get my dogs out and find my kitchnen to make coffee; also use it before bedtime to get out of my recliner and find the bedroom. Other than that I don't usually need it--so I that is why I say you need to move around don't sit too long.

But don't only move around either. LOL. so tricky.

I am not sure--but I think if your leg muscles hurt when you just press on them here and there-- that may not be caused by the disc.

Chronic pain takes on a life of its own. the way it was explained to me-- your central nervous system literally becomes sensitized and then you have pain errupting all over the place and not just where your original injury was. That is how one dr explained fibromyalgia to me. Now there are other theories but this makes sense to me.

If that is the issue--your pain dr. may be able to offer you trigger point injections as well--sounds like you may have had that? I'm thinking it may turn out that surgery may not fix your pain issues. although I don't know. There are folks in this group that have had surgeries and they may be able to tell you a lot more than I can. just will pray for you that something improves.
Mary... again.
 
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mnjeepguy responded:
First off, welcome to a wonderful support group. There is a lot of info here and some bright and caring people to help you through this. I am treated fro but not diagnosed with fibro. I have back issues as well though not a s severe as you are dealing with.


Moving a little every hour or even less is key for me or things start to lock up. If I am idle too long things seam to get worse. Light movements, nothing too strenuous is best.


Fibro in men is rare, but it does happen. If I remember right it's about 20% of all with fibro that are men. There may be more that go undiagnosed because men are less likely to go to the doctor for problems.


I find that if I sit to long it is worse.
Stress makes it worse.
Working to hard, going beyond your own limits.
Abrupt weather changes or big storms coming through.


Meds can be a godsend, or they can make things worse. Read everything you can on what you take or are thinking of taking. The pros do not always outweigh the cons.


This is a wonderful place and I am sure more will chime in with great advice to help you. Hang in there Johnathan.


Cory
 
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dollbug responded:
Hello Johnathan and welcome. MiMi in NC. Sorry that you are dealing with so much right now. I know just how hard it can get. We, FMers, are not a good group for doctors to know exactly how to help us. We are all different and what helps one may or may not help another. I think everyone must go through their own trial and error process to find the *right combination of tools* which will help them cope better. I often wonder if it is because we are so sensitive, due to the wrath of the dragon, aka FM.


I would like to encourage you to be sure and get a good doctor who understands and treats FM. There are still a lot of doctors who do not have a clue. (some do not even think it exists) I would also encourage you to be sure and ask the doctor to check your Vitamin D level, which is important for a lot of people these days. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. It requires just a simple blood test BUT you must ASK the doctor to run it, as it is not included in the normal blood work that the doctors do. I really do not understand why since it is so important.


The doctor will check your *pressure points* and if they are tender to the touch or perhaps really very sore, the doctor will determine if you have FM. (there is a blood test to check for FM but it is over $700 and insurance companies are not paying for it yet)


Learning how to pace, pace and pace even more might really help you. Learning NOT to push yourself is just as important, but it is also very hard to figure out as well.


Getting enough sleep is also a must. Our bodies need the rest so that they can repair. I think a lot of us have sleeping issues, off and on.


Drinking plenty of water is also important. Watching your diet is also just as important. Sorry that your weight loss surgery did NOT help your pain. Doctors sometimes want to blame *everything* on weight issues.
I am sure you are glad that you did this anyway.


Try using a heating pad on places that you are having so many problems with. I have a heating pad which cuts itself off. There are times when I use it just to try to rest some.


In order to figure out what is going on with you, you might try keeping yourself a journal just so you can keep track of your activities, what you eat, your pain level and how much sleep you are getting. This might provide you with what might be causing more pain. It just might also help the doctor to understand more about how you feel.


I hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as well. You will find some good *tools* that perhaps you have not thought of trying.


I do want to add that I hope you will continue to post here. This is a good group of people and I am sure you will learn a lot from us. Ask questions, make comments and/or suggestions. Remember we do understand what you are going through as we have all been there done that. It helps when you know there are other people who truly understand how you feel.


For whatever reason, we do not have many men who post. We have had several who have joined and then they have disappeared. I think Cory is our only *regular male poster* who has stuck with our group for some time. I do think that there are more men who also suffer with FM than is reported....but I think that men do not *address their pain* like we women do.


The more you learn about what others have found that has helped them, the better you will figure out what might help you.


Take care and good luck.




MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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missist replied to dollbug's response:
I think you will find if you visit more-- Mimi-- in particular is one who has quite a few surgeries and is very good at treating her pain issues w/o taking drugs. She's quite an inspiration to me--I do take meds and would like to take less but not brave enough yet.. soon.
Mary
 
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booch007 responded:
Dear Jon,
I didn't read all the other responses but I will say that you are in a spot here. With L4-L5 and S1 involved your legs will always give you trouble. The nervous system there is branching out alot and can wreak havoc on the lower half of the body.

I was wondering about bowels and urinating...often a complaint I have heard. Urgency and diarrhea is a problem. This is nerve denervation......those nerves are stimulating, then not stimulating the muscles to function. The signals to the muscles are off. How about seeing a spinal surgeon to fuse the spine there. Remove the discs that press on the nerves before it is too late and they are damaged forever. Get another opinion. GET TO A BIG FACILITY...like Mayo, Cleveland or the largest teaching medical center you have near you. Search out the spinal trauma surgeon there.

Looking at the meds, you are covering alot. I think the epidural didn't hit right that no relief was obtained. What is your best position for relief, is there one? I love to tell patients to sleep in a recliner as it does so much good for the body. But with spine issues the upward tilt may make symptoms worse, you complain that flat gets you more......Try a hard surface to sleep on so the body is in more allignment than a soft movable cushion.

Hoping the MRI tells him it is in the column and can be FIXED.

There is little for a mechanical issue other than a mechanical fix.

Hoping it can be done. And you can get down from all the meds. It's the worst when the back hurts...also the feet. Two areas that really get me. I am used to numb hands and headaches, limited turning of my head....all upper body issues. Give me a problem below the waist I fall apart!

Hugs to you and hope that you get this figured out. Would an abdomenal binder help you? It would hold you more straight.....did they ever brace you? Like being in a neck brace for cervical issues. Holding you in line may help the movement on the discs. Just still thinking of how to help.

Sorry, I hope an answer comes your way and the MRI gets it for you. Nancy B
 
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nowthis replied to booch007's response:
Thank you all SO MUCH for your replies!!!

I went & seen my PM DR again yesterday and my MRI showed no changes since my last MRI, nothing to explain any changes/increases in pain.

In my mind, and after reading and reading about FMS, I'm pretty sure that is it, but of course I'm not a DR and their probably can be other things it could be BUT....I really think this is it. While I was there i had him change the 15mg oxycodone to 15mg Morphine hoping that maybe it was just my tolerance since I've been on that dose close to about 4 years? Well it isn't any better, unfortunately! I was REALLY hoping I would just get some relief to where I could sit comfortably for 4 or 5 hours and not be like "Damn, I'm hurting, I sure wish I would be without pain for a couple hours". BUT that wasn't the case!

So I go back to see him in two weeks for my normal 3 month visit(I get my prescriptions every 3 months) and am not sure If I should ask him to refer me to a Rheumatologist to check into the Fibro or if I should ask him, I honestly think he isn't the best to do this as he is definitely a neuro surgeon that does pain management. I think I'd prefer to see someone who REALLY knows what they are looking for and are possibly a specialist on FMS? I live in Atlanta, Ga so SURELY I can find one that specializes in this!

I always just feel so sore in certain places and another thing I had read was a balance thing, some times I'll just be walking and completely lose my balance! It's not like a multi daily thing but it happens a few times a week for sure! It's one of those things where I'm like "How the HECK did that just happen???" and among other issues.

The hardest part of ALL OF THIS is just dealing with the pain while WORKING! Some days at work all i can do is sit there and not be able to think about anything else but how bad I'm hurting! It makes me feel extremely unproductive! I NEVER get enough sleep, in the literal and sense of the term, I usually get about 4 hours or so, last night I got about 8 and I've done nothing but lay around today! I don't EVER feel like doing anything. I feel like over the past two years I have just became more & more tired and feel like doing nothing after going to work and that's only because I have to! If I didn't have to, I WOULDN'T!!! I just don't feel like it! Some days I just take extra meds just to be able to stay at work which ends up screwing me in the end but at the time I have no other choice!!! I have such an awful low tolerance to pain, or maybe I don't and am just in a lot of pain? I don't know anymore and it's so frustrating and completely draining.

So I guess my question I would like the most opinion on at the moment is, Do I wait until my next appt with him, or do I start researching Rheumatologist in Atlanta that REALLY know FMS and just get my own Appt made??

Thanks again for everyone's responses and support!
 
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nowthis replied to nowthis's response:
ONE more thing I forgot to mention! The past few months have been the worst and I read that stress is a major trigger of causing it to flare up...Christmas Day my Dad had a horrible car accident & was paralyzed from chest down, he's still in the hospital, had to have neck surgery, etc. Anyway, I'm wondering if the stress is what could be causing this to all just flare up like crazy?!?!?! B/c no matter what I've done with changing meds around, or whatever it may be it's just not doing it, that's why I think it is FMS.

Anyway, just wanted to add that!

Johnathan
 
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mnjeepguy replied to nowthis's response:
Stress is a huge trigger. It could very well be the reason for it worsening. It's a part of the spiral in my opinion. Stress makes us depressed. Depression makes pain worse. That has to be a tremendous stress load. I hope he heals quickly. Hang in there.


Cory
 
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nowthis replied to nowthis's response:
ONE MORE THING!

I believe I'm going to try Physical Therapy ONE MORE TIME, it's been years but heck, If I can get a free massage out of it a couple times a month, that alone will be worth it!!!

I believe Since I have met my Max Out of Pocket on my Insurance It is covered at 100% and I don't think I have a co-pay on it, so if I can AFFORD IT, then I'm definitely going to give it a go!

Anyone found this to be helpful?
 
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bette_kaffitz replied to nowthis's response:
Jon,

It sounds like you've been doing everything right in your search for answers. As you probably know, none of your tests (except a tender point exam) will help diagnose fibromyalgia. But they will help your Drs. rule out other possibilities. There are other conditions that are more completely treatable that could explain your symptoms. If one of them is the problem, you will quickly be on the road to recovery.

If you have fibromyalgia, on the other hand, there are a whole bunch of medications that work for some of us but not for others. If this is your diagnosis, your doctor will probably start you on whatever she has found to work on her patients and not have too many side effects. Please be patient. Finding the right mix for YOU may take a while.

About physical therapy: Please be careful. Go very gently. Make sure any PT you visit understands the ins and outs of fibro. It is very easy to overdo. All those phrases you used to describe your pain do a great job of describing how you'll feel if your PT overdoes it. (I once had a 6 week flare up from a PT EVALUATION! Ask any doctor who prescribes PT if aquatic therapy would be a better choice for you. The combination of warm water and having your body supported by its bouyancy can give you all the benefits of PT with none of the pain,

Please let us know how things go in the next few weeks. We care. We try to help.

Bette


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