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just_grace
Regular Member


Date Joined Jul 2010
Total Posts : 62
   Posted 7/25/2010 11:08 AM (GMT -7)   
Hi everyone!
 
I found this forum while doing a search for more information on fibromyalgia, fm rx's, side effects, and other topics.
 
I was first dx'd with fm 2 years ago after my gp referred me to my rheumy when I was seeking information on why I was always exhausted and ached constantly.  It was depressing.  Still is a lot of the time.
 
My family thought I was just being lazy, or trying to get out of things.  My husband was constantly telling me to get out of bed, that I slept too much, and got aggravated when I told him it hurt for me to do little things.  My daughter thought I was just being lazy, or didn't want to help her with things.
 
Being dx'd helped to get my family to back off and  shut up harrassing me when I said I was tired, or ached.  It really hit home and got through to my husband after my first appointment with the rheumy when she did the tender point tests and in less than an hour I was in so much pain it was difficult to walk, and I was literally bawling in the stores as we ran our errands.  I'm not one to cry over anything in public, yet I was reduced to tears.  My husband had never seen me in so much pain and it really woke him up to what I am dealing with.  Since that day, if I say I'm too tired or I hurt to much he is so much more understanding.
 
I have also been diagnosed with ibs, osteoarthritus, carpul tunnel, bone spurs and a neuroma.
 
The rheumy started me off right away on Lyrica which showed some benefits, a few side effects, but was just not enough on it's own to tackle my fibro.  Side effects were dizziness, dry mouth, balance issues (which I already had, they just became more of an issue), drowsiness, irrability, and what I refer to as "tunnel vision" because I felt as if I was stuck in a tunnel and could only see a certain area.... like I had those blinders on they put on race horses)  I didn't feel safe driving.  The max dose I was put on was 150mg 3 x day.  I chose myself to cut out the 2nd dose mid-day because the side effects were just too much for me to deal with at that doseage.  Yeh, that means more pain but less side effects. 
 
I was also put on 1000iud of D3 a day because my vitD level was about a 7.  I have to continue to take the vitD in order to maintain an acceptable level. 
 
After a year of being on the Lyrica, I hit a level of the most pain I've ever felt making it difficult to walk across the floor.  Sitting, standing, laying, everything hurt!  Even my clothes hurt.  I was waking up in pain in the middle of the night.  This is when the doc tried me on tramodol.  I didn't last 2 days with it.  Within 20 minutes of taking it, I was puking for the next couple of hours.  Doc changed it to nortriptylene and built up the doseage so I now take 100mg of it every night before bed.  As soon as Savella was available on the market, my rheumy added it to my rx's. 
 
Savella has, for the most part, given me my life back.  I just this week had to take 2 days off of work and spent those days in bed because of the pain.  It's the first time my pain level has been as dibilitating as this since I started taking Savella. 
 
I am concerned and have been looking for information linking my current meds to what I believe are photosensitivity seizures.  I have never before had a problem until about 8 months ago when flashing Christmas lights made me feel very disoreinted, like I was moving in slow motion, stuck in a strobe light.  I know no other way to describe it.  Recently at work, a flashing/flickering lightbulb which was going out had to be turned off completely until the boss could replace it because I felt as if I was severely druck if I looked anywhere near it, which could not be avoided.  Once it was turned off, I felt fine again.
 
I have a call into my rheumy after having to miss work and spending the weekend in bed.  She's told me previously there is nothing more she can do for me or rx me, that I will have to come to acceptance and learn to work around my fibro.  But I can hope that in the 3 months since I've seen her there is something new to consider.  I should mention, she referred me and I was accepted to the Mayo clinic's pain rehab center last year.  I couldn't go.  Even if the insurance would help, I can't afford it. 
 
I had bone spurs removed last October from my toes which were causing severe pain.  It hasn't even been a year, and they are back along with what my podiatrist tells me is a neuroma.  I have tried cortizone shots, which lasted less than 2 months in providing relief.  Recently I have been applying Voltaren gel (which my rheumy had rx'd for use on my knees, feet and lower back which didn't seem to provide any relief there)  to my feet at least twice a day.  I have found some relief doing this and will continue to use it.  I will have to ask my doc to write a new rx for it though as I hadn't had it filled in months since it didn't work for the original use she rx'd it for.  Podiatrist says my only other option is another surgery on my feet which he won't do unless I agree to take at least a month off from my work schedule.  Not an option. 
 
The economy slump has really hit home for us when my husbands work cut out over a $1000 of his work income a year and a half ago and has no immediate plans to return to that pay scale.  Another job for him isn't really an option either because his work place provides the only insurance we have.  If it wasn't for this, there's no way I would be able to afford my rx's.  Without my rx's I am positive I would not be able to work.
 
Changing work for myself, isn't much of an option either.  My workplace knows I have limitations and are more than willing to work with me.  A new employer, most likely not.  Not to mention, I can't sit for long without pain.  Lately, I can't sit at all without pain.  Pretty sure it's either bone spurs in my joints or my siatic nerve.  Neither good.
 
I apologize for the long post and thank those who have read this far.  I'm seeking alternatives for helping with my fibro and more information overall.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 7/25/2010 11:43 AM (GMT -7)   
Hi, and Welcome to the forums! I personally don't use an rx for my fibro yet, but I do an all natural way. Pool therapy. In a nice ool set at 90 degrees. Notice there is no P in the ool, and please keep it that way :P Perhaps asking your rheumy if pool therapy can be an option for you. I'm in the NorthWest, and I go to PT Northwest not sure if any are in your location though. But I've found it helpful. The key is not to over do it though.
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis, Anxiety
Medications:  Tri Nessa, Percocet, Metformin, Prednisone, Cingulair, Albuterol, Pro-Air, Morphine, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops, Percocet, Immuran, Alvesco, Allerga, Gabapentin, Visteral  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl Undergoing Chemotherapy Taking Lorazepam (Ativan) For MRIs and Anxiety, Surpressed Immune Sytem


sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 7/25/2010 12:09 PM (GMT -7)   
Hi Grace and welcome to our fibro family. Im sorry you are having so many problems with pain right now. Im really surprised that your rhuemy said there is no more she can do. Our bodies tend to adjust to the meds we are on so that they no longer work as well as they did. Then it is time to try different meds. I have a hard time taking any oral pain pills due to sensitivity issues to them. I hope that you find something that helps but we have a great bunch of caring and loving people here. Feel free to ask questions and we will answer them the best we can.
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)


MinnyMouse
Regular Member


Date Joined Jun 2010
Total Posts : 197
   Posted 7/25/2010 2:17 PM (GMT -7)   
I am concerned and have been looking for information linking my current meds to what I believe are photosensitivity seizures. I have never before had a problem until about 8 months ago when flashing Christmas lights made me feel very disoreinted, like I was moving in slow motion, stuck in a strobe light. I know no other way to describe it. Recently at work, a flashing/flickering lightbulb which was going out had to be turned off completely until the boss could replace it because I felt as if I was severely druck if I looked anywhere near it, which could not be avoided. Once it was turned off, I felt fine again.

Hi Grace,
I really think you should have this checked. This could be seizures. My oldest daughter had childhood Epilepsy, which as she grew up seems to have gone now, doc said it might. But anyway, What you described is exactly what would happen with her and then she would sieze. After the seizure she would lose time, sometimes she could not remember anything that happen from that day for up to two days later. All a fog, she would always sleep for two days after. She was put on Depakote and Effexor, years 7-18. The strobe was always a trigger for the seizure and that's how we initally found out she was Epileptic, however, after finding out what to look for we found that she would have several small seizures through the day and many times when we thought she just was not listening and seemingly not hearing us, she would just stare through her dad and I when we were talking, She in fact was having seizures at those times too.
This can be very dangerous. Please make sure you talk to your doctor and that they run the needed test so you can monitor and be monitored. If there is something seriously wrong, better to find out what it is.
Probably could be other things as well, I really have no idea, but this is my experience with my own daughter.

Take Care
Diagnosis:  Fibremyalgia, Chronic Myofacial Pain, Degenerative Disc Disease, Degenerative Joint Disease, Connective Tissue Disease, Lupus, Osteoarthritis, Anemia, Issues caused by being severely double jointed. Vitamine D Difficency.
  
Meds:  Vicadin, Meloxicam,Omepraxole(high dose previced) Vitamin D 50K , Ambian, Savella,Lyrica, Tramadol, Cyclobenzopine, Voltaren Gel, and Pennsaid Drops.
 

"Trust in the Lord with all thine heart; and lean not unto thine own understanding.
In all thy paths acknowledge Him, and He shall direct thy paths." Proverbs 3:5,6

 
 
 


TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 7/25/2010 3:24 PM (GMT -7)   
Welcome, Just Grace! We're glad to add you to the family here. This is a very warm and welcoming group of people. I just arrived last month but they've made me feel like I'm among the bestest of old friends. You're going to love this place.

What Minny said about seizure's struck a chord with me. An ex-b/f of mine had seizures, and he told me that flashing lights and strobe lights for sure would put him into a seizure. Like she said, maybe it would be good to get another doc to evaluate this. (Which type of doc does one see for seizures?)

If your Rheumy said that about "not much more he can do" I think he's being lazy. You're a patient who simply needs more thinking, more research and maybe he's not too interested in working that hard. Pah! That's not very nice of him. I had an allergist like that - brilliant doctor - but what a jerk for dumping my quest for answers about my hives because the easy answers didn't yield results. Can you try another rheumy? Or, maybe even a very nice g.p. who isn't afraid of thinking outside of the box?

You deserve to have a doctor who is in your corner and working for you 100%.

*hugs*

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4648
   Posted 7/25/2010 5:55 PM (GMT -7)   
Hi Grace -
You may still not be taking enough D. According to a journal article in Medscape the formula for getting D level up to the (new levels) of 50 - 90, you need 100 units D for every 1 ng you are low. That would mean you would need 5000 units a day on top of whatever you already got in vitamin and calcium.

Of course check with your doctor! After a few months you should be getting D checked again.

The toxic level is 10,000 units a day over time.

I need 4000 units a day to get my level from 17 to normal range. I take 2000 in the AM, then another 2000 units if I don't work in the garden or something in the sun.
Alcie
 
 


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 7/25/2010 8:06 PM (GMT -7)   
Hi Grace, welcome to the forum. Sounds like you have lots of issues going on, so you should feel right at home!

My daughter had one Grand Mal seizure, out of the blue, when she was 14. She's been on Lamictal now for 6 years, seemingly with no seizures. But we now suspect that she may be having lots of "absence" seizures for years, because sunlight can make her feel strange and out of it at certain times of the day. She starts this swiping motion over her eyes, totally involuntarily, and forgets what's going on for a few seconds. She had an eeg(?) done a few years ago, and the report said, "abnormal activity, but no definite seizures." So we're going to do it again, making sure she gets in the sunlight this time. One of the many reasons I'm not happy about her driving to California tomorrow!!
Achey
This too shall pass...   
 
 
.......fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed
    
 


just_grace
Regular Member


Date Joined Jul 2010
Total Posts : 62
   Posted 7/25/2010 9:13 PM (GMT -7)   
Thanks for all of your replies!
 
I do plan to discuss with my doc whatever is going on with me when I'm exposed to flashing/flickering lighting.  Thankfully, it hasn't been but those two occerances which were enough to concern me.
 
Rheumy had my vitD rechecked again at our last appt and so all is good there as long as I continue my daily dose.
 
Part of the issue with my rheumy saying "there's not much more she can do" is because I am limited to what she can rx me due to sensitivity.  I do plan to question her next appt as to what other options there may really be.
 
I would love to be able to use the pool therapy!  But I live in the beautiful middle of nowhere middle America.  It is a good hours drive for such accomodations to me.  An hour car drive leaves me very uncomfortable.  Walking, while I would love to do so on a regular basis outside of my job as a server in a busy restraurant, is also difficult to do due to the 8 months of winter.  I do try to keep a routine of yoga, though if I manage 4 days out of the week I'm doing pretty good.
 
I've spent the last two years very busy learning not to be angry over my dx's and just find a level of acceptance and learning to settle into a routine that I can usually live with and still feel like I participate in life around me.  It's been a lot of trial and error, a lot of putting my foot down and educating my family, work and friends. 
 
It was really a depressing blow this weekend to have a flare so bad I had to miss work and spend my weekend in bed rather than riding on the back of our harley with my husband as I had planned.  He did offer to still try to take me, but I think I am best keeping it close to home and getting ready for another week of work as I return on Tuesday.

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 7/25/2010 9:58 PM (GMT -7)   
Just Grace, my jaw dropped open when you said you're a server and also that you can ride on the Harley. How on earth do you manage with the pain you have? Do you have to take large doses of meds to do those things?

EML
Regular Member


Date Joined Jul 2010
Total Posts : 202
   Posted 7/26/2010 6:14 AM (GMT -7)   
Hi Just Grace
I'm new to the boards as well.

I think everyone can relate to one another here and that is what is so wonderful.

My EX hubby also told me that I was just being lazy and there was nothing wrong me. He didn't understand at all. So most days when I felt bad and hurt I would keep it to myself and would try to do what I could.
But unlike my Ex, sounds like your family has come around and that is wonderful.

I also have balance issues and have the most difficulty dealing with that most days.
And I also take the D-3.
Doc wanted me to take it for my dizziness but it hasn't done a thing to help with that. LOL!

I'm sorry for the difficulty that you are experienceing with the lights.
My eyes are very sensitive to certain light but I don't know if it's due to the fibro or not.

Sending you gentle hugs with a warm welcome.
Maria
------------------------------------------------------------
 
Fibro    Acid Reflux    IBS


just_grace
Regular Member


Date Joined Jul 2010
Total Posts : 62
   Posted 7/26/2010 10:03 AM (GMT -7)   
TheChickenPrincess said...
Just Grace, my jaw dropped open when you said you're a server and also that you can ride on the Harley. How on earth do you manage with the pain you have? Do you have to take large doses of meds to do those things?
 
 
Well, on days like this past Friday I manage through shear force of will.  It helps that my employer accepts my limitations and allows me to pace myself for as much as business allows. 
 
On most days, I manage by staying too busy for it to weigh in, if that makes since.  Friday, shear force of will to make it through the day, knowing I *had* to because there was no replacement for my shift and we have to have the money I make.  I do know without a doubt had I tried to work Saturday they most likely would have been taking me to the hospital.  Friday, I could not keep the pain from breaking through my mind, my work day.  It was difficult for me to even take a customers order.  I came home and once I made it into the house, sat down and cried.  Really concentrating on what I need to get done, and some deep breathing seems to help most of the time. 
 
As for my riding on a harley, it is the thing I love to do the most.  It can be hard on me, so I only ride on my best of days making sure to take frequent stops.  My husband put some special foot pads on the bike for me that also allows me to stretch my legs out and makes the ride a bit easier.  We were supposed to ride today, but after having such a rough weekend and going back to work again tomorrow decided it's probably best if I don't. 
 
There have been times where even with frequent stops on the ride, my husband has to literally lift me off the bike and assist me in walking for the next few hours.  I can't handle riding a harley of my own because I never know when I will not be able to use my legs (which often can happen to me).  Which is why I simply ride with my husband.  Some would say I have no business being on a bike, but I will quit riding when I die.
 
as for my meds, no.  Most don't even phase me, or make me ill.  I take 150mg of Lyrica 2 x a day, 50mg of Savella 2 x a day, 100mg Nortriptylene at bedtime.  Fish oil, 1000iud D3, a multivitamin, and 20mg Omeprezole (sp?).
 
When my flares get really bad as they did this past week, I go to bed.  I've asked my doc if there is anything else which could help, and she says "no".  So I pace myself and pray to make it through each day.

just_grace
Regular Member


Date Joined Jul 2010
Total Posts : 62
   Posted 7/26/2010 10:12 AM (GMT -7)   
EML said...
Hi Just Grace
I'm new to the boards as well.

I think everyone can relate to one another here and that is what is so wonderful.

My EX hubby also told me that I was just being lazy and there was nothing wrong me. He didn't understand at all. So most days when I felt bad and hurt I would keep it to myself and would try to do what I could.
But unlike my Ex, sounds like your family has come around and that is wonderful.

I also have balance issues and have the most difficulty dealing with that most days.
And I also take the D-3.
Doc wanted me to take it for my dizziness but it hasn't done a thing to help with that. LOL!

I'm sorry for the difficulty that you are experienceing with the lights.
My eyes are very sensitive to certain light but I don't know if it's due to the fibro or not.

Sending you gentle hugs with a warm welcome.
Maria
 
My family has *finally* came around.  My husband now helps more around the house, actually encourages me to sit down and relax while he takes care of xyz.  Sadly it took that first appt with my rheumy which left me in so much pain and barely able to walk for it to wake him up.  I don't know what I would have done had he not finally acknowledged my pain is very real.  The last several months it seems he has come to acknowledge my pain even more.  I can't tell you how much stress that alone has taken off of me.
 
Ha ha!  Not only can I stagger quite often but I've been known to walk right into a wall.  I just joke with my co-workers that the walls actually move and jump in front of me.  It's the reason my husband has nicknamed me "grace".
 
 


EML
Regular Member


Date Joined Jul 2010
Total Posts : 202
   Posted 7/26/2010 10:15 AM (GMT -7)   
Just Grace,

My ex boyfriend had a motorcycle and too Loved going out for rides.
I would be sore after long rides as well but it was worth it to me. LOL!

That is one of the things I miss the most now that we are no longer together.

So...ride some for me please! :D
------------------------------------------------------------
 
Fibro    Acid Reflux    IBS


TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 7/26/2010 1:35 PM (GMT -7)   
Well Grace, you are one tough cookie. :) I give you loads of credit.

Have you considered applying for disability? I'm looking into it right now. There is a lot to learn. If you won your case, you'd have an income that might free you from having to work so much. I believe you can earn up to $900 or $1000 per month and still qualify for it - so maybe if disability didn't pay enough you could work a few hours to supplement? Just a thought. It is a tough thing to consider, I know.

I hope you get to ride until you're 112. :D

just_grace
Regular Member


Date Joined Jul 2010
Total Posts : 62
   Posted 7/26/2010 8:33 PM (GMT -7)   

EML :-) I've probably gotten to ride less this year than in years past.  Between work, the weather and other family commitments this was the first weekend in about 6 weeks where I thought we would be able to go.  Then my fibro flares. 

 
Maybe next weekend after the inlaws leave we will be able to go for a short ride at least.....
 
 
ChickenPrincess, *lol* my mother says I was born stubborn and nothing has changed.  Actually *lol* my doc thinks my pure stubborness is a lot of what has gotten me this far.
 
I have a friend here who has been dealing with fibro far longer than docs knew what they've been treating.  She is surprised how much I still manage to do.  I've heard it's pretty hard to get approved however and know we just can't manage without the income I bring in.  I'm carrying the bulk of our debts right now.  The idea scares me of not being able to pay my bills, not to mention my rx's.  I'm convinced without my rx's, I would not be able to function even with little household chores.  And I would be absolutely bored to death.
 
 
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