[Missa]

I just got back from pain management.

I guess you can say I got a preliminary dx of Fibromyalgia. I was prescribed Elavil and Lyrica. I have to take them for the next two weeks and then go back and report any differences. If it doesn't help, then and only then will they start testing for other more serious conditions.

Doc said he felt comfortable in saying what I am experiencing is Fibromyalgia. He says I have absolutely no other symptoms that would make him think it was anything worse. TOS was not mentioned, as I wanted to see where these Docs would go with this on their own, without any prodding from me. However, the testing for pulse upon certain arm positions was done and he said it was absolutely normal. Did this come up normal for those of you with TOS?

I also have to have PT for the next month or two. He said my muscles are severely spasmed/constricted hence why I am getting such bad pressure in the ears and a feeling of pain/pressure in my jaw and on my neck.

What do you all think of this? Do you think I should push for the testing of more serious conditions now or wait and see if these meds work?

[johannakat]

I wouldn't call fibro a walk in the park or anything...it's pretty serious.

I think the real question will be how do you start sorting out the source of the spasms. Did he test oyu for the tenderpoints? Did you have them? I have TOS and do not have the tenderpoints. Like TOS, I think fibro is a diagnosis of exclusion. so I would hope your doctor has some reasons for having dx'ed you with that without diagnostic testing.

As Diane always used to say...muscle spasms happen as a result of nerve aggravation...the muscle locks up to protect the nerve which is feeling attacked or aggravated in some way. One way or another you'll have to locate and alleviate some of that aggravation to reduce the muscle spasms adn thereby reduce the pain and symptoms you are experiencing.

I did have pulse abnormalities in the provacative arm positions before surgery. Post surgery my pulses are normal but I still have symptoms. pulse abnormality only shows arterial involvement in your TOS. You can have neuro entrapment and symptoms without pulse loss, even though they frequently appear together.

I hope you have read some of Tam's posts re: lyrica. A lot of people on this board have had good pain relief but lots of bad side effects. You won't know for sure until you try it how it will affect you, but be on the lookout. I haven't been on it myself.

Anti depressents are also often used for pain, so if you are really uncomfortable with lyrica after you read more about it here, maybe talk to your doc about one of them. I take effexor, but there are a host of others out there like cymbalta, lexapro, wellbutrin, etc etc.

there are probably many problems that can cause the symptoms you are experiencing...tos and fibro are pretty difficult to dx absolutely, but are two reasonable possibilities. Your description of treatment doesn't seem so terribly different from something you might do for TOS. Just don't let the PT make you do anything that hurts (especially strenghthening exercises), and give it a few weeks. Also, make sure you get a PT who is used to dealing with people in pain. If you are not making progress, you can start to talk to the doctor about other options.



johanna

[Jomar]

2 of the PTs I saw - did the pulse/position testing shown on this site {near middle of page}- actually a few more arm positions to pin down exact pulse stopping angles
my chiro did many of them too
http://www.nismat.org/ptcor/thoracic_outlet/

did your Dr check both arms - like in the photos?

Fibro info-
a fibro pain & symptoms chart / graph -
http://www2.rpa.net/~lrandall/fmslog.html

our stickys have some fibro sites listed in post #1
http://neurotalk.psychcentral.com/thread84.html

[Missa]

johannakat,

My doc pushed on various areas of my body and asked me if they hurt. There were a good amount of spots that yes, it did hurt. After he examined me, he told me that I had many tenderpoints, especially in the upperback, arms, upper chest near collarbone, neck, etc.

[jo55] When he did the positional arm testing, he did do both arms. He said my pulse stayed completely normal on both sides.

As for Lyrica, he put me on an extremely low dose of 25mg 3 times a day. Am I wrong that most people on this have much higher doses? Because every post I've seen about it they are usually 250mg 2 or 3 times a day. I've only been on it since thursday evening but I have not had any side effects so far but that could also be because of the low dosage. Also, before I started the new meds, I hadn't had my constant aching in my left chest area and now I do. Usually at night and it's extremely bothersome. I don't think the lyrica is touching that at all... again, because of the low dosage maybe? The Elavil I was prescribed is working wonders for sleep. I can actually stay asleep for a couple hours at a time now instead of 20 min or so at a time. For that, I am so happy!

The more I think about it, the more uncomfortable I am with the dx of Fibromyalgia. Mainly because I truly don't have pain all over my body. That is one thing about Fibro that separates it from a lot of other things. All my issues are upperbody. Even the doc made a statement about it being an all over the body thing... but hello, I told you I only have pain above my waist. I guess I didn't say this at the time because I was so overwhelmed with everything he was saying/doing to examine me. And also, my pain usually happens when I am doing something, ie move the wrong way, lift something too heavy, sit at the computer too long, etc. Also, the pains in my neck/collarbone area feels like a pulling which results in my chest feeling tight and achy. I wouldn't think Fibro would do this. But then again, I could be wrong. Also, this all stemmed from me sitting at the computer... so I am almost positive this is a posture/repetitive injury type thing... like TOS.

The PT I will be seeing is actually at the Pain Management center. They have a chiro, physiatrist, pt, rheumatologist, etc. Doc said he wanted me to do PT to work out those muscles so I have a feeling that he means to maybe strengthen them? I go on monday for a visit with the PT so he can get an idea of what I need... I guess he'll give me certain exercises and see where my limits are? I'm not sure, I just know my first visit won't be real PT but rather him just getting a feel of where my issues are. I read on here about someone's PT being the one to mention TOS them, maybe that will be the case with me?

I'm not sure if I should call and try to get back in the my actual pain management doc right away b/c of the lyrica or just keep taking it til the 24th when I go back and maybe give it a chance to start really working? I'm just afraid I'm going to have this constant ache for the rest of the next 2 weeks.

I personally would like to be tested for other diseases, not because I think I have them, but for peace of mind, and to actually be able to get a handle on whatever it is. Doc at this point doesn't seem to think it's necessary but the more I think about it, I do think it is very necessary. I don't want to be dx'd with Fibro just because my symptoms sound like it... I want to be dx'd because they have ruled out every other possible thing.

[Missa]

So I've only been on Lyrica since thursday evening and I already feel myself bloating up! Also, I have some relief from the shooting pains I get but have no relief from the aching in my chest/armpits. It makes me feel really dizzy as well... and kind of like blurred vision.

Should I start taking less to eventually get myself off of it? Or just keep taking it until I see the Doc on the 24th?

Not sure what to do here...

[momzpeachy]

Originally Posted by Missa

So I've only been on Lyrica since thursday evening and I already feel myself bloating up! Also, I have some relief from the shooting pains I get but have no relief from the aching in my chest/armpits. It makes me feel really dizzy as well... and kind of like blurred vision.

Should I start taking less to eventually get myself off of it? Or just keep taking it until I see the Doc on the 24th?

Not sure what to do here...

Hi Missa

I am off to surgery tomorrow and I'm in a lot of pain today so i can't type much. I was put on Lyrica and had bad side effects. It did help but the side effects were too extreme for me to handle. There are other medications out there that work with not as many SE. It sure sounds like you have the symptoms of TOS and not fibro. That was mentioned to me by one physician as well but none of the Dr's I have been too agreed with that diagnosis. I don't have pain everywhere. It's not fibro. I would really do a lot of talking with your Doc and explain your symptoms in detail. Ask for tests that can confirm TOS. There are no tests for fibro. If you can't get any answers or anywhere with this Doc...find another one. You may want to look into a Vascular group but make sure they are familiar with TOS and can get you in the right direction. Also just prescribing meds is not the answer for TOS. I have been through Hell for a year and can't take meds. I'm almost glad that I can't because I would've been a zombie who was depressed and in pain. I had to fight and do it all my own. I wish you luck and lots of us are here to help. i won't be for a while but take care.

Momz

[finz]

LOL......Way to go Dr Momz ! Great diagnostic work !

Missa.....I saw your most recent thread and came back here searching for more info out of concern that you have cerv. radic, TOS, AND fibro.....that your new doctor wasn't dismissing fibro as if it was a case of either/or when it could be a case of both. I've been away a few weeks, so I hadn't seen this one where fibro was dx'd but you were already doubting that dx. It appears that you have great instincts !

We used to joke back on Braintalk that we should take donations and send one of us (like Di, Jo, or Tam before she felt this bad) to medical school so that we could all get the correct tests, dx's, and treatment I think we are going to have to move Momz to the top of the list ! Boy, did she call your case right !

This part could probably go in the new thread, but I am so glad that now you have found a doc who you really feel comfortable with and confident in their skills. You can't get the right treatment plan until they get the dx right. It sounds like what your doc is thinking is that it's a double crush......the nerve is compressed near your spine (maybe a disc, maybe a bony prominence from arthritis or problem with the vertabrae) and in the thoracic outlet. That's sort of what I have going on.......my TOS is better managed now after work with a great PT, but the impingement at the nerve root is still a big problem.

Regarding the Elavil and Lyrica......they are meds that could be prescribed for TOS too. I know that many people here have horror stories related to some of these meds. I think knowing those issues is an important thing to consider......along with the possible benefits and your doctor's recommendations when thinking about a new med. I'm on Neurontin, similar to Lyrica. It does help with the zingers (my name for the occassional intense pains that feel like an electric jolt), but only brings my baseline pain down a little. I gained about 30-40 pounds. Truthfully, I was overweight beforehand and an emotional eater, so I'm not sure that I can "blame" the Neurontin or whether it was from my eating to cope with pain (although I don't think I ate more than usual) and my sudden sedentary lifestyle from pain. After about 5 months on Neurontin I also (like Tam) became diabetic. Again.....can't be sure it was from the Neurontin in my case. I had already been overweight. My mom also has adult onset diabetes........but she was 70 when it developed....I was 40. Who knows ? I have recently tried tapering off it.....my blood sugars were much lower (within normal range even without my diabetes med), but my pain issues were worse, so I'm back on it.

I'm also dizzy.........but is it from Neurontin or TOS/cerv radic/trigger points/chronic myofascial pain ?

I'm also severely fatigued all of the time....but is it from the Neurontin ? because I can only sleep for an hour or two at a time d/t pain ? or could it be fibro/chronic fatigue (which I suspect but have not been dx'd with) ?

I'm on Zoloft and Nortriptyline, for depression and for the help with pain and sleep. I also had good results from Cymbalta in the past.

I guess where I'm going with the medication comments is........read, educate yourself, don't take anything that you don't need..........but if you really need them, the benefits do outweigh the side effects for many of us as part of the pain management plan. Unfortunately, you can't even be sure how effective each ed will be and what side effects that you will have until you are already taking them

I'm keeping my fingers crossed for you that the right physical therapist will make a big difference. Take comfort in the fact that you are finally on the right path with a doc who gets it. Hang in there !

[Missa]

The nerve compression in my neck is definitely because of bulging discs. I had an mri that showed bulging discs and deg. disc disease at c4-c7. While the mri didn't show a nerve compressed at the time, my doctor has since told me that it's a positional compressional, meaning it's only when I'm in a certain position or doing certain things that it starts flaring up. Which I have to agree with him about because I am don't have constant pain, it's only when I do certain things or am in one position for a long time, like using the computer. My new Doc was upset with my Neuro because he said that since no nerve impingement was shown on the mri that it wasn't a nerve issue and therefore there was nothing more he could do for me. He just kind of wrote me off.

So far I have had physical therapy twice and already notice a lot of improvement. They have been doing electrical stimulation on my upper back and neck as well as some stretching exercises and light massages. I also see a Chiro every other visit. I have been much more aware of my posture, which I think that in itself is playing a huge role.

After yesterdays visit though, I was in a lot of pain. My left side is much worse than my right and I have a couple trigger points in the upper back area on that side. My pt was trying to work that out and I just think he was stretching it a little too much. I did tell him that it hurt really bad and he stopped but I was still in so much pain on that side last night! When I go back tomorrow I'm going to tell him to go really easy. I don't think they've decided yet on whether or not they'll do trigger point injections on me so we'll see.

As for Lyrica, Doc took me off. It wasn't helping at all with the pain and was giving me muscle cramps in my legs. Since then, which was almost 2 weeks ago I think, I haven't taken anything for pain. I do have vicodin I could take if I really needed it but I'm trying to ride the pain out when it does come. So far I've been successful with that which I am thankful for because I don't want to resort to vicodin as it keeps me up at night and when I do get some sleep I have very bad nightmares with it. As for sleep though, I've been taking Elavil. It works wonders on me.

I'm sorry that these meds may be having these effects on you. I knew weight gain was a big thing with Lyrica but I figured I'd give it a try anyway because if it works well then it works. You have to go with what works especially when you're in such pain every day.

I also get dizzy and I think it's from my occipital area because my muscles are so spasmed and/or constricted that they are pulling on my jaw and forehead area. I'm not sure if it's actual dizziness or it just makes me feel that way but I definitely think that's what it's from because it's only days when those muscles are really bothering me that I get that way.

Anyway, thanks for being concerned! I appreciate it! And thanks for all the info and yes, I will definitely educate myself on ANY meds they give me BEFORE taking them... just to have some awareness of how I might react. Thanks again!!

Originally Posted by finz

LOL......Way to go Dr Momz ! Great diagnostic work !

Missa.....I saw your most recent thread and came back here searching for more info out of concern that you have cerv. radic, TOS, AND fibro.....that your new doctor wasn't dismissing fibro as if it was a case of either/or when it could be a case of both. I've been away a few weeks, so I hadn't seen this one where fibro was dx'd but you were already doubting that dx. It appears that you have great instincts !

We used to joke back on Braintalk that we should take donations and send one of us (like Di, Jo, or Tam before she felt this bad) to medical school so that we could all get the correct tests, dx's, and treatment I think we are going to have to move Momz to the top of the list ! Boy, did she call your case right !

This part could probably go in the new thread, but I am so glad that now you have found a doc who you really feel comfortable with and confident in their skills. You can't get the right treatment plan until they get the dx right. It sounds like what your doc is thinking is that it's a double crush......the nerve is compressed near your spine (maybe a disc, maybe a bony prominence from arthritis or problem with the vertabrae) and in the thoracic outlet. That's sort of what I have going on.......my TOS is better managed now after work with a great PT, but the impingement at the nerve root is still a big problem.

Regarding the Elavil and Lyrica......they are meds that could be prescribed for TOS too. I know that many people here have horror stories related to some of these meds. I think knowing those issues is an important thing to consider......along with the possible benefits and your doctor's recommendations when thinking about a new med. I'm on Neurontin, similar to Lyrica. It does help with the zingers (my name for the occassional intense pains that feel like an electric jolt), but only brings my baseline pain down a little. I gained about 30-40 pounds. Truthfully, I was overweight beforehand and an emotional eater, so I'm not sure that I can "blame" the Neurontin or whether it was from my eating to cope with pain (although I don't think I ate more than usual) and my sudden sedentary lifestyle from pain. After about 5 months on Neurontin I also (like Tam) became diabetic. Again.....can't be sure it was from the Neurontin in my case. I had already been overweight. My mom also has adult onset diabetes........but she was 70 when it developed....I was 40. Who knows ? I have recently tried tapering off it.....my blood sugars were much lower (within normal range even without my diabetes med), but my pain issues were worse, so I'm back on it.

I'm also dizzy.........but is it from Neurontin or TOS/cerv radic/trigger points/chronic myofascial pain ?

I'm also severely fatigued all of the time....but is it from the Neurontin ? because I can only sleep for an hour or two at a time d/t pain ? or could it be fibro/chronic fatigue (which I suspect but have not been dx'd with) ?

I'm on Zoloft and Nortriptyline, for depression and for the help with pain and sleep. I also had good results from Cymbalta in the past.

I guess where I'm going with the medication comments is........read, educate yourself, don't take anything that you don't need..........but if you really need them, the benefits do outweigh the side effects for many of us as part of the pain management plan. Unfortunately, you can't even be sure how effective each ed will be and what side effects that you will have until you are already taking them

I'm keeping my fingers crossed for you that the right physical therapist will make a big difference. Take comfort in the fact that you are finally on the right path with a doc who gets it. Hang in there !