A comment on ibuprofen use

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lydia

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I am curious about planningguy's Ibuprofen experiment; is the intention to see if it does make an impact on the twitches, cramps, and sensory issues? I recently moved and all the activity involved with that was taking me over the tolerance/functional level for my stiffness and soreness and I began popping 9-12 motrin a day. It certainly took the edge off so that I could at least still move around and get done what needed to get done. It helped so much that I have just continued with it. Both GP and neuro know this, neither suggested not to do it (but neuro gave a Rx for some narcotic). But the motrin does not help with twitches, nor does it help with cramps. Nor does it help with the deeper aches. I don't believe I have sensory issues, so no comment there. I wonder if my having essentially performed the "ibuprofen experiment" for the last 6 weeks, with no change in twitches or cramps or speaking (slurring) sheds any diagnostic info...of course I don't have any inflammatory/autoimmune things on the differential (yet) so maybe none of it matters in my case.

Also curious that I didn't get any lecture on the motrin use (abuse?).

Lydia
 

rose

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OOPs, I wrote this long response, and then saw that you've already been diagnosed. So... like Caroline had brought up, many take the baclofen, also tonic water helps with cramps (but not twitching)
 
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olly

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lydia/rose

i swear by baclofen,it is the only thing that has helped me .
it will relieve any spasms,cramps,muscle aches ,stiffness and even twitchings.
with some people it can make them tired but i have never had any problems.
the dosage needs to be built up gradually to a daily dose of 40-60mg a day is the norm.
it does not get rid of all symptoms but calms them down so there easier to cope with.
take good care.
caroline:-D
 

lydia

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Hello Rose/Olly

Rose-I am so bummed you removed your original post, I only had a moment to read it before running out and I thought, wow, this woman is soooo informed about her health, etc...I was going to read it more closely upon returning and now it's gone. And so sad, my memory is so awful I can't remember what you wrote!

But why do you think I have a diagnosis...? I'm just in the differential part (PD vs MND vs muscular disorder)? That means they don't know yet, right? And I am suspecting that even those possibles will change as results come in, afterall neuro decided on those after only 15 minutes with me. So I am not putting much stock in any of it at this point.

Olly, I had this stretch of cramping that was so debilitating that I begged GP for something and he offered more motrin. Yikes, how much do you have to take before it's an overdose? Begged to neuro and she gave me painkiller, not any of the medicines I have heard many on forum talk about for cramps (like Baclofen). Nurse said neuro didn't want to give me anything different until she figured out more about what was going on. It's ok though, I enjoy painkillers, especially with a glass of wine:-D

Lydia
 

rose

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Rose-I am so bummed you removed your original post, I only had a moment to read it before running out and I thought, wow, this woman is soooo informed about her health, etc...I was going to read it more closely upon returning and now it's gone. And so sad, my memory is so awful I can't remember what you wrote!

But why do you think I have a diagnosis...? I'm just in the differential part (PD vs MND vs muscular disorder)? That means they don't know yet, right? And I am suspecting that even those possibles will change as results come in, afterall neuro decided on those after only 15 minutes with me. So I am not putting much stock in any of it at this point.

Olly, I had this stretch of cramping that was so debilitating that I begged GP for something and he offered more motrin. Yikes, how much do you have to take before it's an overdose? Begged to neuro and she gave me painkiller, not any of the medicines I have heard many on forum talk about for cramps (like Baclofen). Nurse said neuro didn't want to give me anything different until she figured out more about what was going on. It's ok though, I enjoy painkillers, especially with a glass of wine:-D

Lydia

LOL, sorry about that, I think what made me think you had a diagnosis already is I went over and looked at your public profile, and it said you were diagnosed.... BTW, a nice glass of wine and a Valium, and then we don't care so much what's wrong, :)

.... moving on, here is what I wrote about earlier.

When I first started realizing I was sick I had extreme fatigue, I thought I was jet lagged because at the time I flew as an international flight attendant, and was working on the wrong side of the clock. I had awful muscle cramps. They would start while I was walking back and forth in the aisle on the plane, mostly in my feet, but then after I'd finally get in the bed, I'd be wakened with just horrible charlie horses in my thighs, calves, sometimes elsewhere in the body. My fingers were kind of stiff, they'd stick in position sometimes.

I started noticing dry mouth, already had dry eye, then began having a weird sensation in my chest with breathing after exercise and and rest. Right about then my voice started sounding weak, mostly to others, they'd comment on the phone mainly, asking if they woke me (and believe me, working weird hours, my always response to that question is a defensive "no no, I wasn't sleeping" regardless if I was or not.) ~ I digress ~ back to what led to prednisone.... I was treated for asthma (re: the breathing) simple blood tests originally "ruled out" Sjögren's syndrome, until later when it became a primary susupect.

When it didn't seem to be asthma, and my voice continued to worsen, I was sent to a rheumatologist, who guessed at autoimmune, re-ran all the blood labs (I've had them about 6 times now) and put me on Mobic, which is an anti-inflammatory for a trial. I did not get better. So, a lip biopsy was done to examine a salivary gland. That came back with "minimal focal inflammation, not diagnostic of Sjögren's) ~ but~ I was getting sicker, so my doctor decided to try treating it as Sjögren's anyway. I was started on Plaquenil (a quinine) and prednisone. Well, the muscle cramps that had been such a bother, that NO doctor seemed to care about, went away, but everything else was the same, or worsening.

My rheumatoligist tinkered with the dosages of both medications, but other than sometimes not being as fatigued, nothing improved. Eventually he added Methotrexate to my medications. It is another immunosuppressant, and is sometimes used to treat myasthenia gravis.

Months passed, and my ENT doctor just couldn't see anything wrong with my vocal cords, he thought maybe they looked thin, but said I needed someone with a higher level of expertise than he could offer. Due to a variety of reasons, it took about 3.5 months for me to get in to that kind of specialist, a laryngologist.

She looked at my vocal cords, recognized that they were atrophied, and attributed my weak voice to them being bowed because of the atrophy. She and a neurologist performed an EMG of my vocal cords, and that was when the first tangible explanation was found. Even though there was a pattern of denervation/reinervation, no one brought up motor neuron disease to me as a possibility yet.

A couple more months passed, more symptoms started cropping up. mostly having to do with my tongue. I started having problems swallowing some, and having facial cramps.

This was when the neurologist that did my vocal cord EMG and my regular rheumatologist, both decided (separately) to send me to the same rheumatologist for a consult. This guy is a guru in the field. He's up in years to still be practicing medicine too. He spent a long time with me, and said he felt that if Sjögren's had indeed invaded my nervous system, that my other problems with dryness would be much more severe first. He was not at all convinced that I even had Sjögren's.

He felt that we had reached the place where trying all of these medications were at the tipping point of causing more potential harm than good. He put me on a high dosage of prednisone for two weeks. He felt that if what was at the root of my illness was inflammatory in nature, that it would have to have some sort of impact on it in that length of time. If I got better in a measurable way, (not feeling better with less fatigue) but if my voice, or one of the other problems improved, then we could feel it was caused by inflammation, and he and my other rheumatologist would start me on a variation of chemotherapy. If I had no benefit from the prednisone, then he felt that an inflammatory cause could be ruled out, and he said he did not feel that I had a treatable condition if that were the case.

I did not get better from the prednisone. I did have some damage to the retina of my left eye from it as a souvenir though.

So, my regular rheumatologist, the neurologist, and and he, all concurred that we weren't dealing with inflammatory autoimmunity.

My regular rheumatologist wanted me to go to Johns Hopkins. He felt that I was already seeing top notch doctors in the New York area, and that none of them (including himself) were helping me any.

Originally I went in through the rheumatology department at Hopkins, I think because it was what my referring doctor's specialty was, and from there, that doctor at Hopkins referred me to a neuromuscular doctor there.

She concurred with everyone else, that I should have had a response to the prednisone if I had an inflammatory condition, and that the lip biopsy was not enough evidence to base a Sjögren's diagnosis on, and none of my blood work had supported it either.

Sorry this is so long, but I figured if I was going to answer it again, I might as well get it all in. It usually helps to get the whole background. The bottom line is that if an anti inflammatory such as ibuprofen or prednisone will improve symptoms, then its a treatable condition.

Hope this helps :)
 

olly

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rose

when i first went to see the rehumatologist he mentioned about putting me on methotrexate,but wanted to wait for all the test results to come back first.
i am glad he did as he told me of the possible side effects,my main concern was hair loss.
it is also used for cancer.
take care.
caroline:-D
 

lydia

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hello Rose/Olly

Rose,

Thank you for reposting your post; I joined this forum a while ago because I thought maybe what was happening to me was similar to what was happening to those on the forum. I would read the posts but I wouldn't really absorb them...it was all so strange, I didn't really believe that what was happening to me could possibly be the same as what is happening to many here. I was and still am impressed by the support and compassion offered to posters, but quite honestly thought...it would never happen to me! But after seeing what my doctor put in writing...let's just say that I am now rereading everything with a completely different mindset; this is real, this is possible, and I need to get informed asap. Your posts, BethU, Olly, Z (sp?), Brenda, all of you...you are so "with it", how do you do it I wonder. I honestly feel as if my brain can't handle any new content knowledge, but I need to! But thank you again for reposting. I find detailed posts such as yours very very helpful.

Oh, I don't know why my profile says I was diagnosed, I suppose I must have highlighted it on the dropdown menu when I joined, but by accident, it doesn't describe my situation. I landed here as many do, googling "twitches". The only difference I suppose between me and many others is that the twitches didn't bother me. I developed so many facial tics during graduate school that when they suddenly showed up in the rest of my body I just assumed I was doing too much. I read the stories here and thought "sounds like me...but couldn't be!" Anyways, I adjusted my profile to accurately reflect my situation.

Lydia
 

planningguy

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Rose (Have you given up on anyone ever calling you by your name, I noticed you've stopped signing your posts :) ),

Thank you for going through your diagnosed process again. It is very illuminating, as I am getting ready to go to the rheum for the first time in October.

Robert
 

rose

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Rose (Have you given up on anyone ever calling you by your name, I noticed you've stopped signing your posts :) ),
Robert

LOL, yes I have. and there's no need to add to the confusion for us on here anyway, life is confusing us enough right now!

I can't believe I typed that whole health history out again! I should save it somewhere in case I need it again.

Lydia, I totally get what you mean when you say you didn't really believe that what was happening to to you could possibly be what is happening others on here. I feel like I stepped into the Twilight Zone! Actually, I'm still pretty much in denial about my own situation.... make sure you keep us posted as to the latest and greatest with you.

Oh, and Caroline, the Methotrexate did make my hair thinner, so did all the other meds. It has come back some, not completely. While I was waiting to see if the prednisone was going to work, and I was to begin the chemo, I remember I actually researched its side effects to see what was going to happen to the rest of my hair. I think the name of the drug was Rituxan, it is an I.V. drug, and I learned that one does not lose eyelashes or eyebrows with it, so I was like, OK, guess I'll try that next if they want me to, (but they didn't :neutral:)

take care everyone, Rose (who is actually Diane:))
 

lydia

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comments & question on ibuprofen

Ok, so I can barely learn my students' names anymore-I will never learn your real names as well as your screen names! You all will stay olly, rose, planningguy, etc... for a long long time.

I will keep people posted here as the plot unfolds; I am not telling many in "real life"-I wasn't telling anyone until I knew for sure what was up, but agreed with olly's (?) previous comment that it doesn't take a lot of energy to be supportive so I thought "just do it" and started by telling 2 people; and one person was so upset and scared, I thought how unfair of me to do that, I'M not even that upset and scared (yet); and the other basically said I was exaggerating and that doctors are all morons (involved in the education of medical students and has little respect...) and completely dismissed it all and hasn't mentioned it once since. Well ok then!

Back to ibuprofen...on the days when I am especially sore (which means also especially stiff, they go hand in hand) it seems I also have an overall ill feeling, almost like having a fever, and kind of queasy. The more I do the more icky I feel. Could that be a result of too much motrin? By the time I feel like that I have usually been up 6 hours and usually have already had 6-8 motrin. Sometimes I imagine that the more I use my body, no matter how trivial the tasks, that my body does what I want it to but is releasing some sort of poison/toxin in return and so by the time I have done everything I need to do I am completely ill from the effort. If I do virtually nothing (watch movies or read books) I don't get that ill feeling. I have been taking the motrin for awhile now, but I think I felt that ill/queasy feeling even before. Not sure though.

Lydia
 

olly

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sorry lydia

sorry your disclosure of your illness to your friends were exagerated responses.
feel free to just confide in us for now.
please ignore my advice in future,i wont be offended lol.
take good care.
caroline:-D
 

lydia

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Hi Olly

Olly,

I thought long and hard about which friends to share with first, I completely over analyzed it-to no avail! But I completely agree with your thought, it doesn't take alot to show you care and to be supportive, and I know if it was one of my friends, I would want them to include me in their journey right from the beginning...so I am balancing that mindset with the one of doing it alone until things are resolved...I will see what happens in two weeks and then bring more inside. But in the meantime, I am obsessively on the forum. I can see why people feel the need to swear it off. I have people over for a barbecue for petes' sake and where am I? Checking to see the latest forum updates while pretending to go to the bathroom. OMG. So Sad.

Lydia
 

rose

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Olly,

I thought long and hard about which friends to share with first, I completely over analyzed it-to no avail! But I completely agree with your thought, it doesn't take alot to show you care and to be supportive, and I know if it was one of my friends, I would want them to include me in their journey right from the beginning...so I am balancing that mindset with the one of doing it alone until things are resolved...I will see what happens in two weeks and then bring more inside. But in the meantime, I am obsessively on the forum. I can see why people feel the need to swear it off. I have people over for a barbecue for petes' sake and where am I? Checking to see the latest forum updates while pretending to go to the bathroom. OMG. So Sad.

Lydia

I started crocheting a shawl for my daughter for Christmas. It keeps both my hands busy, so I can't be on the computer :cool: Plus, I told her I was making her something, (didn't say what) so now I've got to follow through with it.... anyone ever "felt" a crocheted wool item before? (if so, feel free to share) This is my first attempt, and as the felting is done after the piece is completed, what if I screw it up and have to start over again! That's even more cause to keep my hands busy!

Seriously, you feel free to hang out here as much as you like, always seems like there's something interesting going on.

I am sorry how your friends so far have reacted. I'm not so good at telling people yet either. One friend I ran into at the airport, when I told her, and tried to be light and casual about it she burst into loud, hysterical tears!

.... ok, back to my bifocals, the work in progress and another glass of wine :-D
 

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Lydia- I get that queasy/ill feeling too. I've had it off and on for months now. I think mine is related to being short of breath. Before I found myself waking up breathing really quickly, and before I felt like a small child is sitting on my chest, I got that gueasy feeling.

Rest helps, as does breath-stacking. (Look up how to do this using our search feature.) A Pi-pap machine helps too.

As for the cramps- are you on Qualiaquin? This is the generic name for Quinine and the pills are more effective than tonic water, or so my Doc claims.
 

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ROSE

I have a question in regards to your comment on your symptoms. When you say that you had cramps in your feet, do you mean like a cramp where you feet or toes stiffen up kinda thing? I get a achey feeling in my arches and ball of feet or even my heel feels like it is being pinched, but no actual cramp like what i use to get in my first 2 pregnancies. Years ago when i was preg with the boys if I stretched my legs in bed I would get a charlie or a toe cramp. I did not strectch during this last preg. Is that what you mean?

How in the world did they do an emg on your tongue? I would like one but it sounds terrible! Were you awake?

Thanks!
ps. I have been quesy/shakey/feeling like am pregnant (NO I am not) for over a week now! I am hoping this passes. I had a hard time at target and doing errands today. I feel like off balane.
april
 
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