Lyrica, Cymbalta, MS-Contin=stuttering???
 

Ever since I was placed on Lyrica, I have what my PM doctor terms "cognitive slowing" (boy isn't that complimentary!). One of the main problems is that my speech gets very slowed and I stutter, almost like someone after a stroke with expressive aphasia (there is the neuro nurse peeking out). I have thoughts which are clear in my head, but can't get them out clearly. It is worse when I am upset, nervous, tired, or have just taken a dose of Lyrica. PM says it will go away, but I find it profoundly embarrassing. I forget everything-I wirte down all of the times that I take a medication so that I don't accidentally take it too soon. I don't know that day or date and without writing down all of my appointments and having my husband remind me, I wouldn't even go. Has anyone experienced this and will it go away? I'm worried that I am going to sound like this for the rest of my life. Is this a typical side effect of any of these meds?:Bang-Head:

LL
I believe it can be a side effect with many of these drugs. I take Cymbalta but not the others you have mentioned and I do find that my once excellent memory is not quite so good. That said I have a cocktail of other drugs so it could be one of the others or the combination. At times I have found that I have struggled a bit with remembering what I was doing and saying but it passed.

I think you need to relax about it because one thing is certain, the more you worry about it the worse it will be!! Check out the RXList website for drug info - they have both professional and patient drug information including the pre and post marketing clinical trial data, side effects and interaction stuff. you can also check out the FDA site and UK equivalent for the reported side effects.

If it doesn't pass in a timescale that you think is reasonable, I would go back and ask your doc.

Hi llrn7470,
It's frustrating isn't it. Part of what you are describing is the meds, but a big part is part of the disorder-rsd. RSD effects the Limbic part of the brain-short term memory loss, grasping for words during a conversation, forgetting words, a slowness of speech. although I don't stutter. If you were on no meds, you would have these symptoms. I have them too, I've had RSD 12 years, full body now. My friends know and understand and no one makes a big deal of it. You are still the intelligent person that you are.
I just have to laugh about it now. But really, it isn't a laughing matter. It's a life altering experience. I'm on Lyrica too now. Was on 3200 mg. of Neurotin. I'm having lung problems, so may have to go off Lyrica.
The Cymbalta, I switched to a couple months ago, has really made a difference in my mood. I don't feel that deep depression. I think I finally turned the corner of accepting RSD. Boy, the memory thing. I've missed so many appointments, because of not writing them down. Would have never remembered them. Gone, just completely gone from memory unless, write it down.
We have a coffee service company. My husband has had to take a more active part, because of my condition. Our business is the only way I can have health insurance-thru our group insurance. If you notice, a lot of the posts don't make sense in some sentences. We turn around words, or skip a word. And spelling is a big problem.
I don't mean to discourage you, but RSD is alot more than what we learn in the beginning. It probably is good we learn little by little. How much Lyrica are you on? I'm on 300 mg. but may need to go off as am having some lung issues. Read on this forum about lung issues tied in with Lyrica. I haven't discussed it with my Dr. yet, but will.
Take care, and I really do hope I didn't discourage you. I remember I think you got this monster after knee surgery? right? Mine was after surgery too.
Let us know how you are doing. Loretta

Hi Lori Lee,

Loretta is very right about this being a part of rsd.

Because of my sensitivities I can't take very many of the rsd meds. If I need to take an Oxycontin I have to go to bed. I can't function at all on that, mind you when I'm at the point that I need to take that I can't function either because of the pain. Needless to say my drug list is very short, with only Tylenol 3, Ibuprofen, and Oxycontin, each on a need to basis only. I rarely take the Oxycontin. I take calcitonin daily.

What gets me through this and manages my pain levels very well is IV lidocaine infusions 800mg (100mg bolus, 700 mg in the bag) over 2 hrs once every 3 weeks. It really helps with my "cognitive slowing" as well as a reduction of pain and return of my range of motion. I usually feel very with it after my lidocaine treatments, speaking quickly and confidently with totally improved memory. It's funny to watch me as the lidocaine effects wear off, like a battery wearing down, or slowing down a video tape. I to have to write everything down.

When I tried Lyrica and felt like I was going to go and jump off a bridge so I was taken off it very quickly. Each of the other drugs I tried gabapentin, neurontin to name a few.. each affected my brain function along with other side effects.

On a bright note since starting regular supplements of Omega 3 fish oil my cognitive functioning seems to be better. I still type many word backwards, mix up my words up in sentences and completely skip words as Loretta mentioned. The google toolbar Spell check has really helped me.

I know how you feel, it can be embarrassing at times but we each find various coping methods to help us with this. It's really helps me to get together with an rsd friend in person. I help a friend who has more mobility issues than me and we have a great time laughing with each other over our RSD brain freeze moments as we talk with each other. It seems that only someone else with RSD seems to understand, others just say welcome to the club assuming that it in because of aging, but they have no idea how challenging this can truly be.

I too hope I haven't discouraged you. I got this monster after surgery too and mine was an elective surgery to boot.

MsL

Hi MsL,
Enjoyed your post. I have a good friend here too, with full body RSD a little longer than myself. I call her and see her too. It is wonderful to know someone is person. Can you imagine she has 5 young children to raise. Her own, and her son died and left her with two. She really struggles, has a supportive husband. She got hers from being in a bad car wreck. Her oldest daughter was in the wreck too and is not well. fibromyalgia and she has a child,. They all live together.

My husband is supportive too and my married daughter. She has been married 8 years. Her husband is very kind too. Last spring he planted all my flower pots in the back yard.
My husband and daughter have been to Dr. with me and have done research on the internet. And she is a court reporter and wouldn't you know, has done deposition on a lady with rsd for malpractice suit.

Thanks again for all your encouragement. I live next door to you in Arizona! Sure is better than Oregon. We have been here 10 years. Take care, Loretta

Dear All
I think it is very important not to jump to the assumption that the symptoms LL is describing are definitely part of CRPS (RSD). Yes, there is a hypothesis that CRPS can affect the limbic system in its own right. Yes, it may well be that other people have been affected in similar ways and are able to be absolutely certain that the symptoms are not a consequence of drugs or anything else. However, it it is really important to remember that not everyone gets all of the possible range of symptoms.

Drugs can produce all sorts of cognitive problems as can lots of other completely unrelated conditions and illnesses. Anxiety and stress can cause very dramatic memory loss and cognative problems. The memory problems I have had from time to time with my CRPS have been a consequence of worry and a side-efffect of certain of the the drugs rather than the CRPS itself.

LL, if you are worried then I think it is best to speak to your own docs to make sure that this issue is adequately looked into for you.

I believe there is sufficient research to support the affects of CRPS/RSD on the the limbic system beyond simply a hypothesis. To that effect I have copied a small section of the abstract from Dr. Hooshang Hooshmand's website below for consideration.

"4. EMOTIONAL ASPECTS OF CRPS:

LIMBIC SYSTEM DYSFUNCTION

The forth and final diagnostic principle is emotional disturbance in CRPS. In contrast to somatic sensory nerves, the sensory neuropathic nerve fibres responsible for the development of CRPS do not end up in the contralateral neocortical parietal sensory cortex. Instead, according to Bennarroch, over 90% of these sensory nerve impulses terminate in the limbic system. More over, positron emission tomography (PET) demonstrates a significant cerebral insular and limbic activation during painful stimulation of neuropathic pain. The vicious circle of chronic neuropathic pain leading to disturbance of plasticity, as well as inflammation, causes further long term potentiation (LTP)of pain impulse and nerve stimulation in higher centers in the limbic system. This leads to insomnia, agitation, depression, poor memory and poor judgment. The above neurophysiological observations explain the fact that practically every patient suffering from CRPS demonstrates some degree of limbic system disturbance. In our study of 824 patients, one or more of the limbic system dysfunctions were present in every case except three. These consisted of insomnia (92%), irritability, agitation, anxiety (78%), (depression (73%), poor memory and concentration (48%), poor judgment (36%), and panic attacks (32%). Understanding the nature of emotional components of RSD spares the patient from misdiagnosis and improper treatment."

http://rsdrx.com/CRPSABSTRACT.htm


MsL

I'm not on any meds and have been told that I sound like I'm struggling to get the words out! I have been told that I sound like I just had a stroke not the slurring but just the struggling. I know what I want to say but I have a hard time spitting the words out either properly or at all. I haven't really ever had the best mind but since my injury I couldn't tell you what I did or said or even what I was watching like 2 mins prior. Which I really hate. I'll be sitting there watching a show on TV and a commercial comes on and about the 2nd commercial in I have completely forgotten what I was watching. I have to turn to the TV guide channel then use the previous channel button on the remote to try and remember what channel it was I was watching and look to see what it was I was watching and most of the time by the time it gets to the channel I was watching I have forgotten what I was doing. So sometimes I usually end up watching something else, then about 1-2 hrs later I remembered that I was watching that other show and by that time to late its over and I get extremely mad at myself.

Hi Gymjunkie,

Thanks for the information. It is true we all are different in our response to meds and rsd itself. I can't tell you how many Doctors I had see, until my last one of four years. I had never understood a lot of things I was going thru until he explained the limbic system, that rsd is an automic disorder, affecting circulation, the blood pressure, skin problems sleeping, memory etc. I thankful for understanding it better. I was diagnosed 4 years after the surgery and another 4 years before find this Dr. who had treated a lot in New York. He is a neurologist, psychiatrist, pharmacologist. and sees a naturpathic Dr. himself.
Thru slowly going thro different meds, I finally don't have the jolts. stabbing pains, dailey spasms, jerking legs and arms, and the wonderful electric jolts, going thru my body every night-lifting my right off the pillow. That was fun.

Anyway, thanks for your post, and I wouldn't want anyone to change any meds or do anything without their Drs. knowledge. But we also know a lot of Drs. treating rsd patients have limited knowledge, some just down right do not want us as patients, let alone bother to try and do research and learn more. Take care, Loretta

Hi Iffynah,

I can relate to that. It's so frustrating isn't it. I don't remember any telephone messages unless they are written down. We own a coffee service business. Our coffee trucks deliver coffee, tea, etc. to businesses. Boy, I better write it down, when they reorder their Starbucks. Can you imagine, if their Starbucks doesn't get delivered and they run out. People need their wake up beverage in the am. I miss my part of the business, but, I can't be trusted as my husband puts it. Take care, Loretta

Hi MsL,

Dr. H's puzzles are great aren't they. He is still practicing or is he teaching? Do you know?
My Dr. teaches half the time and practices part time. He is moving to Texas in a couple of years. I'm going to miss him. Won't believe this, I found him in the yellow pages, about 5 minutes from my home. Wild huh. I had another neuro. but he refused seeing me, when our health insurance changed I told him I'd pay in cash each visit, and he said no.. Like I said, some Drs. just don't want rsd patients.

It's Wednesday, how are you doing. Unless I'm really mixed up, aren't you having surgery today. Have been thinking of you all day. Let us know how you are when you get to a computer.. Take care, Loretta

Dear All

I think it is great that people can share experiences and information but it is really important that people don't just jump to conclusions about symptoms they have and assume that they are always part of CRPS. That was the point I was trying to make. I know only too well how difficult it is to find any doctors who know anything about CRPS, in the UK is is even more difficult than in other countries.

With the greatest respect to everyone, there is a lot of misleading, incorrect and out-of-date information on the web. People present hypothesis and opinion as if it is medically proven fact. The issue of limbic disfunction is not something I am necessarily disputing, all I am saying is don't just assume that any cognitive problems you have are definitely a consequence of limbic dysfunction and that it is definitely caused by CRPS - these problems could be happening for any number of reasons including things like stress and anxiety so its important to get them checked out properly.

Again, with the greatest of respect to everyone and I truly don't want to upset anyone, some of the things on Dr Hooshman's site are not entirely accurate and he tends to present hypothesis and opinion as "fact" because of the writing style he adopts. He is retired and there are other people now leading the treatment research into the various aspects of CRPS. As much as you can, I'd urge reading the published medical and clinical papers directly so that you have the underlying information when you then read other people's interpretations of the medical evidence and clinical studies. That is what I do and I find it works pretty well plus it means you can be more authoritative with difficult or un-informed docs!

Hope I'm not upsetting anyone but using other people's experiences based on just the information on a message-board to inform is fine but not as a substitute for medical information, proper diagnosis and and advice.

My goodness Gymjunkie, as I see it this is a support discussion board for rsd patients and as such we should be able to share our experiences and opinions with out being concerned about offending anyone. We are all in the same boat in one way or another.

I'm certainly not offended and would hope no one else would be by an active discussion about our condition and our understanding of it.

You bring up some valuable points of view that should be open for discussion among us. At the same time I think it is important to state that one should not expect lay patients to fully understand all of the published medical and clinical papers that are available out there. Most often I need my doctor to help me understand the full implications of a recently published study. If you are able to fully comprehend all the information that's out there perhaps your limbic system is still relatively untouched by the chronic pain of CRPS and the meds that are prescribed for it :wink:

I think it is expected expected that anyone participating in these discussions would have the good mind to do the appropriate research and consult their physicians specific to their individual case.

I did not know that Dr. Hooshman was retired, he had come to give a talk at an RSD forum that my pain clinic participated in back in the late 90's early 2000's. This was prior to my diagnosis but those who participated in the forum were quite impressed with his understanding of RSD/CRPS. As far as misinformation goes I think Anne Louise Oaklander sums it up very well in her recent editorial titled RSD/CRPS: The end of the beginning. http://www.rsds.org/2/library/articl..._editorial.pdf

Mslday
Glad you are not offended!

Through the course of my CRPS journey I have had periods where I have found my memory was poorer and I was slower but these were temporary episodes which coincided with drug-changes or periods of acute stress prior to one test or another. I have no cognitive impairment but do have, amongst other things, chronic pain (original site and mirror spread), vascular problems, temperature/colour problems, swelling and severely disabling movement problems (full body) which are regarded as being at the more extreme end in terms of CRPS. Just shows that we really do all get a different "bag" of symptoms. I have also been through the awful depression that the diagnosis can bring but have been fortunate enough to recover my pre-CRPS positive and cheery mood which I find helps probably more than anything else!

I have never stopped working in spite of my CRPS and all of the horrible problems it has brought with it. I work full time as the head of legal in a big company. I am very obviously physically disabled but fortunately my mind is as sharp as ever! I thank my lucky stars that I have a desk job and an office environment where my physical disability doesn't prevent me doing my job. I think the type of research and analysis skills I use in my job make it easier to read, understand and interpret the clinical papers and the other articles. I just much prefer to go to the source data and research it from there. If there is medical stuff I don't understand, I research that too. It is just how I am!!!

I'd love to believe that we really were at the end of the beginning. Sadly, there are many much more common neurological disorders which are just as poorly understood as CRPS in spite of massive amounts of research carried out over decades. Today in the UK, 33% of people with neurological problems cannot even be given a diagnosis for their symptoms after testing is carried out. We understand so little in the neurological field! Even in 2008 there are still doctors who don't actually believe that this condition exists and there are people who remain undiagnosed and in misery for years. CRPS is not common enough to attract significant levels of research or funding for research. Whilst there is no doubt that useful things are going on, I am not sure how the current state of the science could be considered to be the end of the beginning just yet.

Anyhow, that is all a bit heavy and off topic so I'm off to do some work instead!