I don't remember which ones of you have said you have both FM and RSD, otherwise I'd send a PM to you. But, can someone tell me how they know the difference in their FM pain and the RSD pain. Isn't the RSD usually at least "over-layed" with the intense burning, along with deep aching, & I usually feel like my bones are being "squeezed" .... hard to explain. And, isn't FM usually worse in the a.m., like arthritis is, but then eases up as you move around? Isn't FM also aching in the joints, also a muscle soreness, along with being tender on those "certain sites" IF someone touches them?

I read recently that FM is a burning pain. That really confused me. I was diagnosed with FM in 1997, was put on 5 mg of Flexerill, and I never had another problem with pain or sleep!

In 2001 I developed RSD to my right upper extremity after my injury & it always felt like the burning, etc.

And, can someone please tell me what you think about this: After I was injured in mid-2001, I kept slowly increasing the Flexerill I'd been on since 1997, until I was taking 20 mg every nite (only at nite so I could stay awake during day to work). But in 2004 it was discovered that it was giving me heart trouble, so they took me off it.

I also read that Flexeriall could cause Peripheal Neuropathy. Since 2002 I'd begun having burning on bottom of my feet. But when I went off Flexeriall it much improved, so I thought that's all that happened. But, the burning slowly went up both legs, until now it's up to mid-thighs, even though the bottom of my feet had improved (still burn, but not like when I was on Flexerill).

So I think that the Flexerill caused neuropathy, which then turned into the RSD.

My left arm & shoulder also have mild RSD now for the last couple of years. I haave severe neck spasms, & just like my arm & shoulder, I can't stand having any cool breeze touch my neck either. Although my lawyer says you can't get RSD in your neck or torso. Is this true?

The burning & needles and pins in my arms occasionally goes across my chest. I don't know if this is just an "echo" from the pain in my shoulders because it seems to usually only happen when I'm in a severe flare-up of both arms.

I've also had trouble with vision for about 18 mos. I thought it was due to starting Lyrica, but even when I go off of it I still have trouble. Mostly blurred when I try to read more than a short paragraph (worse on some days), but I've also had double vision. Has anyone else had this? I recently read Dr. Hooshman's site where he said the RSD can go up the arm into the occipital nerve area (and I have had many Occipital headaches, they tell me), and to part of your brain stem (if I'm remembering right), which can cause vision problems!

Also, he mentioned tinnitus can be caused by RSD. I've also struggled with this, no matter if I'm taking meds or not. I've had to stop my meds for several days at a time to prepare for a Work Comp doc exam, and the blurred vision & tinnitus don't improve.

I'm going to a Work Comp Neurologist on Jan 16th, (unless he reschedules it AGAIN), and I'd really like to know if anyone else has had my type of "feelings" (i.e. the spreading, especially), so I know whether or not I should mention it.

Thanks all!

Denise

With Fibro you have triggerpoints. That is areas that you can feel lumps in your body. I think there are like 18 or 20. Can't remember. My Rheumotolgist felt of the areas that have the triggerpoints. They are in the knees, the inside of the elbows in the back of the neck and shoulder area.

The pain is like all over pain. I can tell the difference in the two but I have had enough medical care to calm down both the RSD and Fibro so that when one flares I can tell.

The RSD pain is so unbearable in the area it is in that it drives you crazy and it seems to me that it is localized to the area of the RSD except for the referred pain that goes with it. I can also tell where it is mirroring over to the opposite side of the RSD.

You do have the deep ache from the Fibro and as you said, they say it is worse in the morning until you move around and get the body loose but I felt mine day and night until I got it calmed down. Also the cronic fatigue seems to come more with the Fibro. I have cronic fatigue syndrome and it's different from the Fibro fatigue.

Like you, I am sore all over and if someone tries to grab me it hurts.

There is a great book on Fibro that you can check out of the libraries. It's called," What your Dr. may not tell you about Fibromyalgia." By Devin starlyndal. Not sure I spelled the last name right. It is an amazing book. It is really thick and she leaves out nothing and also talks a little about RSD in the book. You mght want to read it before you go to the Dr. so you can understand Fibro better. Also Dr. Hooshmand's puzzle helps explain Fibro.

I have never been very good at explaining these. Others might help you more but I just wanted to let you know about this book.

I have the burning on the bottom of my feet. I mentioned that last week here and someone said it was referred pain from the pelvic pain but I'm not sure of that either. I find if I'm on my feet too long I end up in a mess with my pelvic pain and leg and feet pain.

On Flexeril, I couldn't take it so I didn't take it long enough to know what it will do but I do read up on every med the Drs. give me. Bill ended up with gout because of a blood pressure medication and a stroke due to one. I had a stroke and heart attack on vioxx. I am to the point that if I question my Dr. extensively about the meds I take. I actually made them take Bill off of one of his.

I realize we have to take meds to deal with these problems but I tell everybody to read up on the side effects of meds and if they don't let up as the Drs. claim they will in a certain length of time go back and get off of them. I took Vioxx and I was in a mess within one week.

I have the chest pain and I did read in Hooshmand's book that RSD does cause chest pain. I was also told it was from the Fibro, Costocondritis, Esopogeal spasms, and Thoracic Outlet Syndrome. With me they can't seem to figure what's causing what.

Fibro causes eye problems. A friend of mine went to the eye Dr. and she was told she had Fibro eyesight. I just haven't went because I figure that's what they will tell me. I see double at times, I have blurred vision and I can't see far off and I can't see close up at times. Apparently it effects the eyesights in every way.

The neck and arm spasms seem to come with the Fibro. Have you been diagnosed with TOS? That can cause the arm, neck and shoulder problems.

Good luck with your appt.

Ada

Thanks Ada!

I appreciate your info. Boy, sounds like you've got overlapping stuff. How do you keep it all straight at all? Glad to hear you still have a good attitude.

My feel & legs are my real mystery. Do yours hurt at night more than the day? My feet also hurt worse if I've had to be on them a lot. I do have burning in my pelvic area too, but not all the time. I wasn't sure if that was just referred from "somewhere".

So much of what you experience sounds like what I have too. If you think of anything else you may want to describe with how it works on you, you can PM me. Okay?

I'm going to go to some of those sites that jo55 mentioned. I have to get up early tomorrow for a Soc Sec doctor exam! So I'm outta here!

Thanks again,

Denise

Hey Denise,

Thought I'm mention - You wrote:

I've also had trouble with vision for about 18 mos. I thought it was due to starting Lyrica, but even when I go off of it I still have trouble.

My question is: How long were you off it and still noticing problems? A few hours? Days? Weeks?

The reason I ask is this....When my husband was first diagnosed with RSD they put him on Neurontin - (Neurontin is the answer or sister product of Lyrica - Neurontin was involved with a very large class action lawsuit - a short time later they came out with Lyrica with the FDA's blessings on something Neurontin DID NOT have...)

Anyways, When he was on Neurontin I read once (and I'd have to find that information again) that Neurontin could stay in your system/body and one could have side effects for up to 3 years AFTER taking the medication. THATS PRETTY DARN SCARY. My thought is, is that if you were just off the Lyrica for a few days I'm guessing its more then probable you were still experience the side effects (blurred vision) from the Lyrica.

It concerns me that people/patients are often unaware (mis-informed) of how long these meds can "linger" on in our bodies...weeks, months, years later. The Dr's dont tell us this AND it's written in that tiny, tiny print at the bottom of the page IF it's there at all....

SCARY!!!

Thanks HubbyWithRSD,

Wow! 3 years! I would go off Lyrica between one week and three weeks, I guess. I knew it may still be in my system, somewhat, for at least 1 to 2 weeks, but at least mild enough that I would notice a difference with my sight, particularly when I'd stay off of it three weeks (maybe longer).

Also, I'd already been having vision problems before they started me on Lyrica. Usually I can go 3 - 5 years with the same glasses before my vision changes. But it had been only aabout 11 months after getting new glasses that I started having trouble. I still put off going for the eye exam for at least 6 mos, due to money limitations. And it was during those 6 mos that they started the Lyrica.

So, I don't know for sure if it was just normal eye weakening, or the RSD (which I believe affects my occipital nerves), or is the Lyrica. I do believe the Lyrica made it worse, no matter what precipated it!

I also can't think or talk straight on the Lyrica at higher doses. So, that scared me too.

But at least I could function better than when the pain is a 9 & 10 24/7!!!

I appreciate all the advice. Thanks again, guys!

Denise

my TOS spasms and triggerpoints will cause my vision to get worse because at times it is normal {well ,for a 51 yr old person anyway} and other times it is blurry and hard to focus on close objects.
those same things can also affect my voice, speech, concentration, swallowing, memory--- luckily don't have to deal with those problems too often anymore.
******************************************
TOS SYMPTOMS

UPPER EXTREMITY -ARTERIAL
NUMBNESS OF ARMS AND HANDS
TINGLING OF ARMS AND HANDS
POSITIONAL WEAKNESS OF ARMS AND HANDS

VENOUS
SWELLING OF FINGERS AND HANDS
HEAVINESS OF THE UPPER EXTREMITY

NERVES
UPPER EXTREMITY PAIN
PARESTHESIAS OF ULNAR DISTRIBUTION
WEAKNESS OF THE HANDS
CLUMSINESS OF THE HANDS
COLDNESS OF THE HANDS
TIREDNESS, HEAVINESS AND PARESTHESIAS ON ELEVATION OF ARMS

SHOULDER AND NECK ==PAIN - TIGHTNESS

CHEST WALL ==ANGINAL CHEST PAIN & INTER-PARA SCAPULAR PAIN

HEAD == HEADACHES & FUNNY FEELINGS IN FACE AND EAR

VERTEBRAL ARTERY
DIZZINESS, LIGHTHEADNESS
VERTIGO, SYNCOPE
DIPLOPIA, DYSARTHRIA, DYSPHONIA, DYSPHAGIA= {these have to do with - vision, speech, swallowing, and voice}
TINNITUS, EAR PAIN

THORACIC OUTLET SYNDROME SYMPTOMS

The predisposing factors responsive for the development of thoracic outlet syndrome are fibromuscular bands, bony protuberances and long or larger transverse processes, this together with the tendinous or cartilaginous muscular insertions are responsible for the compression of the neurovascular structures at the thoracic outlet.

These abnormalities or variations of the anatomy of this area produce symptoms of thoracic outlet syndrome that have been triggered by trauma or repetitive work. The symptoms may spontaneously occur because there are patients who have symptoms of thoracic outlet syndrome without a history of trauma or repetitive work. The compression occurs in three anatomical structures, arteries, veins and nerves; isolated, or more commonly two or three of the structures are compressed. Compression can be of different magnitude in each of these structures. Therefore symptoms can be protean.

For example, the subclavian vein can be the only compressed structure and this patient might have a thrombosis of the vein that was called in the past effort thrombosis, or a swelling of the fingers. The subclavian artery can also be compressed with symptoms of temporary, arterial, positional insufficiency of the upper extremity. When they are present for a long time, aneurysm and thrombosis of the subclavian artery may develop with distal embolization. Nerve compression of the brachial plexus is very common and is or not associated with venous or arterial compression. Neurocompression can exist without vascular compression.

The intermingling of all this compressions, the degree, and which of the three anatomical structure is the most compressed, might produce protean manifestations of the symptoms in these patients. They are difficult to interpret unless the health provider is aware of the symptoms and the physical examination of thoracic outlet syndrome.

If any individual who has a predisposition for thoracic outlet syndrome performs repetitive work with the upper extremity, it is very likely that he will begin to have symptoms in the first few months after he or she starts to work. On the other hand, some people who may have predisposition may take a longer time and it would take years of repetitive work to show the symptoms of thoracic outlet syndrome.

They may have had symptoms for a long time, without being aware of them, and at one point in time the symptoms become worse and this is when they are first noticed. The individual is affected because he feels tinglingness and weakness and heaviness of the hands and arms, pains in the chest, pain in the upper back and in the neck. It is difficult now to perform the same type of work that before was easy to do. Also the weakness of the hands, sometimes dropping of objects, make it difficult to perform repetitive work.

What symptoms does the patient have? The patient may have few or many symptoms. You can see in the web page the origin of the symptoms, the name of the symptoms, and how they can be classified; they can be together, separate, or isolated and can have a venous, arterial, or neurologic origin. The symptoms also refer to the structure that is compressed and the degree and the association with the others. Some of the manifestations are protean, like anterior chest pains, and if the doctors are unaware of this manifestations, the diagnosis is difficult to make.
above is from this- http://tos-syndrome.com/newpage12.htm

and TrP info at-
http://www.pressurepointer.com/pain_reference_chart.htm

Thank you Jo55!

This was very interesting! No wonder some of my docs commented they thought I had symptoms of TOS. It was the brachial plexus "type". At least from what I could, sort of, understand. I did medical billing for many years & have some understanding of terms. But some of these medical terms were really hard to understand (& I don't have access to a medical dictionary anymore). No matter.

I guess the docs still feel it's due to the RCT(s), & ulnar nerve neuropathy, & RSD, that so much spasms exist, that (I think) this is what causes TOS symptoms. So, by "treating" all the other stuff, it "treats" the TOS symptoms in me.

Thanks again, for everyone's input!

Denise

Hi HwRSD,

Haven't been able to spend much time on the computer recently, but I needed to get back to you about this post, it has been worrying me.

I am worried about this information you give here (3 years???) and need to see the reference you found stating that Neurontin stays in the body differently from the PI statement.

Here is the information the PI sheet gives:
"Pharmacokinetics: Adults: Following oral administration of gabapentin, peak plasma concentrations are observed within 2 to 3 hours. Absolute bioavailability of a 300 mg dose of Neurontin capsules is approximately 59%. At doses of 300 and 400 mg, gabapentin bioavailability is unchanged following multiple dose administration. Neurontin 600 mg and 800 mg tablets are bioequivalent to two 300 mg capsules and two 400 mg capsules, respectively. The results of a single-dose, 2-way crossover, comparative bioavailability study in the fasted state comparing Neurontin 600 mg tablets and 2 ´ 300 mg Neurontin capsules are summarized in Table I.

Gabapentin elimination from plasma is best described by linear pharmacokinetics. The elimination half-life of gabapentin is independent of dose and averages 5 to 7 hours in subjects with normal renal function.

Plasma gabapentin concentrations are dose-proportional at doses of 300 to 400 mg q8h, ranging between 1 µg/mL and 10 µg/mL, but are less than dose-proportional above the clinical range (>600 mg q8h). There is no correlation between plasma levels and efficacy. Gabapentin pharmacokinetics are not affected by repeated administration, and steady-state plasma concentrations are predictable from single-dose data.

Gabapentin is not appreciably metabolized in humans, is eliminated solely by renal excretion, and can be removed from plasma by hemodialysis.

Gabapentin does not induce or inhibit hepatic mixed function oxidase enzymes responsible for drug metabolism, does not interfere with the metabolism of commonly coadministered antiepileptic drugs, and is minimally bound to plasma proteins.

Food has no effect on the rate or extent of absorption of gabapentin."

So, in fact gabapentin has a very short half-life (the amount of time it takes for half the amount of a drug in the blood to be eliminated by the body), 5 - 7 hours, and the information above says that this is not affected by how long you've been taking it. I've looked up the subject on the net and can't find anything to back up your information...could you post an URL, please? Or say where you found the information?

Also, I understood (actually I think we RSders know quite a bit about our meds!) that the main trouble surrounding Neurontin a few years ago was a scam between Pfizer, the med reps and doctors, rather than a problem with the medication itself, which is what your post implies. It was approved by drug-controlling bodies worldwide, including the FDA. If you mean that it wasn't approved specifically for RSD, *nothing* is, we can only take "off-label" drugs because there aren't any "on-label" drugs.

Sorry to be a pain, but I've been wondering about these comments, so I'd really like to see where you got the ideas. We need to be pretty sure about posting "fact" and "rumour" when it comes to meds - a totally different thing from posting one's own experiences. In fact, if you have any URLs for sites discussing how PI information differs from known facts, I'd appreciate that too.

BTW, many of us are on a lot of meds, it's true, and although it sounds like a "bad thing", RSD often goes hand in hand with other conditions, but it is a much worse thing for people to do without them....sad to say, but it's the way it goes. Many times these meds make the difference between someone being unable to function and consigned to a wheelchair, and leading some sort of fairly normal life. I can tell you that I would have a real problem working (which I have to do) without Neurontin. Lyrica (pregabelin), the "next generation" gabapentin med Pfizer developed after Neurontin, is stronger. Doesn't suit me personally, too strong.

Also, medication is becoming so much more "target-specific", rather than the generalized blanket drugging of old, that taking one targetting drug per specific problem makes much more sense....the trick for us, the patients, is to find a balance between them that works for us personally - and we all react differently.

I think one of the really useful things about this forum is that we compare our reactions to meds, both pharmaceutical and natural, as well as describing them for others, and we do try to be specific about references and warnings.

Hope your hubby is doing OK,
all the best

Hi Denise,

How did it go with the WC neurologist? Also, I meant to say before that if you look at the side effects for most of the meds we take for RSD, nearly all of them (!) include "blurred vision", it seems a common problem for many on this board.

Hope the doc appt went OK,

all the best

Just wondering if you could give me more info on the Neurontin lingering in your body? I'd like to learn more about that. Thanks.

Scary all right! I have been taking it for months, but others have taken it for YEARS!

Did the Neurontin work for your husband? What was the maximum dose he tried? My Dr. told me that up to 3600 MG is safe for you if you have RSD. But many people cannot handle that much...