Another diagnosis

[Nana4&cntn]

Well, I was diagnosed with Fibromyalgia today. Prior to my MVA my doc was looking for the reason I was so exhausted, losing weight, having pain, and frequent sports injuries. Then the pain was out of the world due to injuries and I started down the road of figuring what was causing the major back pain, surgeries etc. I forgot all about the Fibro. When I had talked with the PM several years ago, it would be difficult to identify due to the levels of pain I was already having. Well, today this new doc started asking me about what I was there for and we got to talking and he started to touch my back!! I went bonkers, I was in so much pain I could barely stand for him to barely touch lightly. Then he asked if he could touch my arms and legs. Geez, I didn't know I hurt in those areas until he touched them, not hard mind you just a small poke or push and I started crying. As it turns out I have 14 of the 18 trigger points, he didn't try to check the others on my back as I was already crying. So another diagnosis, how many can a person have? I have been having to check my glucose as my internal med doc seems to think I am borderline diabetic. Oh well, I just needed to get this off my chest. I need to do some research to see if some of the pain I have been having could be the Fibro and some other treatment may work better.

If anyone has any info to share please do, I would appreciate any info will be greatly appreciated.

Thanks for reading and any info,
Kathy

[Mark N]

Kathy, the good thing about a diagnosis is you can now start tailoring a treatment on the diagnosis and hope it will do a better job getting your pain under control. Research, Research, Research! Good luck and I hope you start getting better control of your pain.

[Kandra]

Well, I was diagnosed with Fibromyalgia today. Well, today this new doc started asking me about what I was there for and we got to talking and he started to touch my back!! I went bonkers, I was in so much pain I could barely stand for him to barely touch lightly. Then he asked if he could touch my arms and legs. Geez, I didn't know I hurt in those areas until he touched them, not hard mind you just a small poke or push and I started crying. As it turns out I have 14 of the 18 trigger points, he didn't try to check the others on my back as I was already crying.

Kathy,

I'm so sorry you now have to deal with this...you're lucky though that you've found a doc who at least believes in it. Unfortunately some still dont :(
I totally understand about the slightest touch initiating screaming pain.
So what does he plan to do for this??

So another diagnosis, how many can a person have? I have been having to check my glucose as my internal med doc seems to think I am borderline diabetic. Oh well, I just needed to get this off my chest. I need to do some research to see if some of the pain I have been having could be the Fibro and some other treatment may work better.

I made out a list of my diagnoses but I left out a few of them including FMS as only one of my docs "believes in it" (the one who found it on me). In short, one can have quite a few :( How are your sugars??

I know that at rehab one of the exercise physiologists also has FMS and she told me that stretching exercises are the best thing for it. I know Flexeril is helpful med-wise..and Lyrica has helped some.

[slipnslide]

Kathy,

I'm sorry that you are having to deal with just one more thing, like you really needed another condition going on with all else that you already have going on, right?;):( My best g/f has had FM for years and says that pool therapy seems to be one of the only things that helps her more than it hurts her. She has her good days and bad, FM is one of those things I don't wish on anyone:(.

Best Wishes,

Kim

[Kathi49]

Kathy,

I am very sorry you are in so much pain. I was wondering though...weren't you also diagnosed with PN? And nobody jump on me okay, lol, but I THOUGHT Fibro was being tied into Neurological problems/issues lately. Or maybe I am just confused as always. :) It just seems like I read that somewhere. Anyway, my Rheumy did the trigger point tests too; but that was such a long time ago. And I believe there was something like 7. He says I didn't have it...more like chronic inflammation yet every darn blood test I ever have done comes back negative. So, I guess I am just stuck with a crappy spine, nerves, etc. :eek: And IF you are borderline diabetic, I would certainly get that checked out which I am sure you will.

I agree with Kim about pool therapy. It seems to help me a lot for just about everything. I just now got done with pelvic floor PT...so this other is next...pool therapy I mean.

And, oh boy you gals, today's visit was something else! Suffice to say she evaluated the coccyx so you can imagine what it is like having trigger points or spasms where it counts! :eek: Anyway, what she did...helped!!! :) And I will just hush up other than to say...I am on my own now...at least I know how to treat it now. So, I am certain it will be injections from time to time and well, using the knowledge I learned from her. :o

[Lil E]

Anti-inflammation meds, Lyrica and muscle relaxers are the way to go. There is a good anti-inflamm called lodine, its generic is etodolac. Massage helps, the gentle kind and so does yoga, also the gentle stretching kind.

Water aerobics is good as long as the pool is warm enough. Some hospitals have warm pools (85*- 95* is best). You may want to check my post (A great thing has happened) for another possible treatment.

[Nana4&cntn]

Hi All,

I was able to nap for a few hours and feel a bit better! Thank you all for your replies, and support.

Kathi, yes I was diagnosed with PN a few months ago after an exhausting amount of work from my PM and other docs. The meds are helping and that has been a God send! I just never considered FMS as the Rheumy years ago had dismissed it. The exam has set off a myriad of pain today. I have always had pain between my knees and have slept with a pillow between my legs even prior to the accident.

As far as the diabetic stuff I am testing daily with this cute little thingy and my blood:D. It seems to be within range except in the early am and just before dinner. Sometimes it gets down to 60 an hour or so after I eat. So the range has been between 60-156. I was told he can do a print out when I go back in, so I will just keep poking myself:rolleyes: At least it doesn't hurt.

I have been looking for a warm water pool for years, the only ones within a 30min drive are therapy pools. You have to be having therapy to use. I will be asking for a script when I see the PM on Friday. Medicare puts a very tight lid on the number of days you are able to use yearly, so we will see.

I have been unable to take NSAID's as I have hemorrhagic esophagitis (sp) and they open the bleeding. I take a bit of aspirin in the Aggrenox I take as a blood thinner. That hasn't seemed to bother me, but, I am very leery of taking anything else, I think 1 blood transfusion a lifetime is enough. I was lucky I even made it to hospital that time.

I will be talking all of this over with the PM on Friday. The FMS diagnosis is really a throw away diagnosis for me as I already do everything they usually prescribe for it.:confused:

Thank you all for being so supportive:) I have and continue to be so incredibly lucky to have found this forum. I never believed there was this type of support anywhere! All of you are very kind, supportive and knowledgeable!!:) So each of you are my lifeline and I truly mean that.:)

Thanks and Hugs
Kathy

[Kathi49]

Kathy,

I test my blood sugar as well but usually for only a few days after a steroid injection. I haven't had a problem yet or see it get higher. But since I was a gestational diabetic I try to watch it. Did the doc run an A1C? That can at least tell you what your blood sugar has done over the past 3 months. All my doc ever tells me is that I am keeping it under good control. Then if you need to have it done, there is always the GTT.

And I can't take the NSAIDs either on a regular basis. Every now and then I might take a Voltaren. But the weird thing is...even the ones like Arthrotec and Mobic that are supposed to protect your stomach make me sick...so go figure. :D But with GERD and Gastritis and that weirdo gastro bug a month ago I am not tempting fate. :)

And I am glad to hear you will be asking for a script for aqua therapy. I just got another one and will be calling them here pretty soon. It really feels good even if it lasts just a couple of days or so. But the neat thing is...once I complete this round I can go in whenever I want to which will be nice.

And this is odd. Normally heat and humidity kill me in the late summer months. But getting into a hot or rather very warm pool feels great; same thing with a hot bath. So, I don't get it unless it has something to do with barometric pressure during those months. And it doesn't bother me to use moist heat anywhere else.

Anyway, I am rambling again. But I think you will like the pool therapy. :) Oh, and just in case. My Neurologist had put water aerobics on my original script. That is NOT what I wanted LOL! So, the staff at the rehab place had to get that sorted out. Just a caution because I don't know what YOUR doc will recommend. But I can't do the aerobics...it is too strenuous and fast paced. I need the slow and stretch as you go deals! :)

[Nana4&cntn]

Kathi,

Thanks for the reply and info. I did have the A1C, this is why he gave me the glucometer (sp). He wants me testing different times on different days very random. I think the norms are 80-120 but, I forgot to ask, so I poke and ask later..LOL;). Pretend I know what I am doing. I figure at this point he can plug the thing in and it spills the info. I am not really concerned as diabetes does not run in the family, of course I guess it has to start somewhere..LOL

My PM would never agree to water aerobics, I have asked him before. He went on about everything I have and has been done and said maybe AFTER we know everything that is going on. I have been to water therapy before, for trunk stabilization, and the bursitis. He believes in slow steady stretching. He doesn't know just how slow my stretches are the past week or so. I love the warm water and have spent a bunch of time recently in the tub. Maybe a hot tub is in my future?:D The barometric pressure kills me, especially when it in up and down fast, like during thunder storms.

I spent a lot of time looking for therapy pools, still no luck. The nearest one that doesn't require a PT with you is 45-55 min away. It kind of defeats the purpose. Driving causes more pain and spasms. The school system just built a beautiful sports complex with a pool, track, weights etc. The only problem is the pool is for competition swimming and is only 76 at the most, same for the YMCA. The closest hospital with a pool is about 40 min, at least they will allow stretching and walking. It sounds like I live in the boonies, I live just south of Omaha, but the new building is all way North West of me and the interstate system is so user unfriendly from where I am. Nice when I worked as I had a reverse commute, but getting to the pools I want I am screwed. I have one more place to call tomorrow to ask about the temp, its only 20 min or so, and no need for interstate.
Thanks for being a good friend.

what a blab, boohoo I am, Have a great night
Kathy

[Kathi49]

Kathy,

Okay, got ya! :) I wasn't thinking that the doctor probably had you get a glucometer. I bought one on my own since I do NOT have a diagnosis of diabetes. Yet I wanted to test my blood sugar after steroid injections...just in case.

I hope you can find a pool close by. We have a YMCA very close to my home. It has both warm and cold water pools. However, there are no PT's and the classes are mainly water aerobics. I did go into the arthritis class but it was even too fast of a pace for me. Those older folks were kicking my butt LOL!

You sound like me lol, I hate Interstates. :D The pool I go to now is about 30 minutes away but I take the country roads. :) And, yep, it can hurt to drive there but well worth it once in the pool. Driving back isn't as bad since I have some kind of relief for awhile.

And I should clarify again. It wasn't my PM that wrote the script. It was my Neurologist and I guess she was just thinking swimming or water aerobics and not true PT which is what I really needed. The gal that worked with me this last time went very, very slow. As you said...water walking and a bit of traction which actually felt great! But then I had to go and get sick! Since the weather is getting warmer it will be a bit easier to go over there without dreading ice or snow. :)

And since you brought up this whole swimming deal, I am tempted to look at pools for my own yard LOL! Yeah, right, like that is really going to happen. :) BUT...maybe my husband will be in agreement or perhaps want SOMETHING since his back is now bad. But the real deal is...maintenance! Neither one of us want that. Of course you can hire someone to do all of that. But I don't know. Maybe I am just better off going to this rehab place and not have all the worry with my own pool or hot tub. :)

[Jo6]

Kathy, I'm sorry to here about your dx. Fibro is pure hell when a huge flare comes along. When I'm really bad, go to the Dr for reg appointment, he says, "Oh, it's just the Fibro"!
Now that really makes me angry. OK, they can't cure it, not much of anything that I have, just don't brush it off and go on his way!!

Sorry Kathy, This doesn't make sense but I'm in a fricken flare and about to scream. I do have some very stressful things going on right. most of all, my MIL is in the very last stage of Alzheimer's. We expect her to go anytime. That alone is heart breaking.

I shall stop yapping now. I hope you can get some relief, Kathy. Take care all, Jo aka Julia

[Nana4&cntn]

Thank you for all of your support. I don't think I have ever had a flare before! I went thru the pain journals I used to keep and didn't see anything. The last entry was in June of 2006 and I don't remember anything like what is going on now and has been for at least 2 weeks. i have had an hour or so where it lets up and i can rest, I just can't get the pain level below a 5.

Kathi, I forgot about asking for water therapy. I think I will call after I see how the facet blocks work, and have the follow-up appt. You know I really don't mind the interstate if it would take me where I need to go. When Omaha expanded everything is out of the way. I can get to most of the docs within 20-30 min, which is the outside of my time in the car. Its just we need something that takes us faster to the new areas of town.

Julia, I am so sorry about your MIL and your family. Such a sad and horrible disease. I hope you flare eases up!! Has your doctor tried the Lyrica for you? I have been taking it for quite awhile. I was surprised to see it was approved for Fibro, as I have been taking it for nerve pain, go figure. But if it would help, maybe your doc could prescribe it for you. there are some side effects, but PM me and I can go thru that with you if you want.

Take care, Kathy

[Nana4&cntn]

Thank you for all of your support. I don't think I have ever had a flare before! I went thru the pain journals I used to keep and didn't see anything. The last entry was in June of 2006 and I don't remember anything like what is going on now and has been for at least 2 weeks. I have had an hour or so where it lets up and I can rest, I just can't get the pain level below a 5.

Kathi, I forgot about asking for water therapy. I think I will call after I see how the facet blocks work, and have the follow-up appt. You know I really don't mind the interstate if it would take me where I need to go. When Omaha expanded everything is out of the way. I can get to most of the docs within 20-30 min, which is the outside of my time in the car. Its just we need something that takes us faster to the new areas of town.

Julia, I am so sorry about your MIL and your family. Such a sad and horrible disease. I will be keeping you in my thoughts and prayers. I hope you flare eases up!! Has your doctor tried the Lyrica for you? I have been taking it for quite awhile. I was surprised to see it was approved for Fibro, as I have been taking it for nerve pain, go figure. But if it would help, maybe your doc could prescribe it for you. there are some side effects, but PM me and I can go thru that with you if you want.

Take care, Kathy

[Kandra]

Kathy,

Is that what you had on Friday with your PM....facet injections? How did they go and how was the rest of your appointment?

[Nana4&cntn]

Hailey,

Thank you for the information. It really doesn't help me as I have spinal conditions which goes into protection mode (guarding) when anyone even tries to touch my back. I am sure this will help others possibly the Fibromyalgia Forum.

Thank you,
Kathy

[suede]

Kathy,
Sorry to hear of yet another DX, I can relate, I was dx'ed with Lupus with underlying FM a few yrs ago, here is a couple of decent sites you may want to ck. out.
Hugs,
Linda

http://www.sover.net/~devstar/define.htm


http://www.fmaware.org/site/PageServer?pagename=community_supportGroupInformat ion

[Nana4&cntn]

Linda,

Thank you for the links I will be sure to take a look at them when the brain is functioning. I really think I have had the FM for quite sometime but no one would listen. I am sick and tired of being tired and this has been going on for years.

I am sorry to hear about your Lupus/FM, I have a friend who has it also and she is having a really tough tme.

I am goin to stop now, my eyes are crossing I am so tired.

Take care, and thanks again,
Kathy