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09/24/2008 08:02 AM

Newly diagnosed in Kansas

kshomeschoolmomma
kshomeschoolmomma  
Posts: 14
Member

After trying to deal with widespread chronic pain for the last three years, I have been diagnosed with fibromyalgia. I am not on any meds currently as the pain pills one doctor prescribed make me so sleepy that I cannot function as a homeschool mom.Blink hehehe I am new to all of this so I am hoping to get some good info from you all. I am also on a craniophayrngioma online support group that has been a huge blessing in gathering info on my son'd brain tumors. A little prayer and encouragement goes a long way! Besides the pain, I have also been struggling with concentration issues as well as misplacing things/can't remember where I put things. For a while last year I would get confused while driving so my daughter and husband drove me places. I haven't had a problem with depression, but I have had anxiety issues. I have also been diagnosed with IBS after some very invasive testsWhistling LOL I hope you all are having a good morning! Can't wait to meet people that actually understand what I am going through.

~Michelle

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09/24/2008 08:22 AM
raynedae
raynedae  
Posts: 8219
VIP Member

Hi Michelle,

Welcome to the FMily. So sorry about your diagnosis but you will make some great friends here who understand just about everything you're going through.

The forgetfulness, etc is part of fibrofog, our daily nemesis. Aren't those IBS tests the worst? Eek. I've been way better ever since because they insisted I take fiber supplements after my testing. It's worked wonders for me and my tummy is so much better now.

Anxiety is horrible and with your poor son being so sick, no wonder you're anxious! We definitely understand your problems taking meds & sleepiness. The only thing I can suggest there is that sometimes the side effects lessen over time...initially Lyrica made me so dizzy & sleepy that I had problems functioning. That side effect went away quickly but unfortunately some other side effects got worse with time. We're walking medical experiments and I for one have a cabinet full of meds that I've been unable to tolerate. Too bad it's illegal to dispense meds...I'd love to work out a swap with someone.

It sounds like your daughter and husband are helpful and understanding. Good for you!

Welcome, sorry you had to join.


09/24/2008 08:56 AM
Janilee

Hi Michelle, Welcome to our fibro family. The gals and guys here are the best on the internet for support and genuine concern. I'm sorry to hear about your son's condition. I'll have to read up on it. In the meantime feel free to ask any questions. Someone is always here to help out. Keep a positive attitude. It really helps out with all the anxiety and frustration of this condition.

You sound like me rayne. I have a cabinet full of drugs that I got, took one or two and found out I was allergice to them or that they made me sicker. I have no idea what to do with them either. How do I get rid of them? I can't put them down the drain because of all the hype that drugs are starting to show up in our water supply. Anyone have any ideas of how to get rid of them legally?


09/24/2008 05:28 PM
Auntie3285
Auntie3285  
Posts: 9182
VIP Member
I'm an Advocate

Hi Michelle...

Welcome to our Fibro family. I, too,am sorry we all have to meet under these circumstances but you have joined a wonderful group of caring people here.

I, too, have memory and concentration issues some days and I hate both. However, I AM better since going on Lyrica 75 mg 2 per day. Other than Lyrica, I am on nothing else re: Fibro.

And, I was beginning issues with anxiety but I think I have self-dx d and learned to cope with it much better once I accepted that I do, in fact, have the Fibro. (Was in denial for awhile after initial dx from PCP.)

Rayne, are you still taking Lyrica ? I, too, had ""silly spells"" the first couple of days taking it. (Periods where I would get ""space-y"" and very giggly ... pretty funny at work a few days ...LOL !!!)

Then, probably 3 months into taking Lyrica, I was exhausted and sleepy all day long and finally told Rheumy I couldn t live like that. He suggested taking BOTH of my Lyrica pills (75 mg each) at bedtime instead of morning and suppertime.

What a difference ... within that week, I knew we were onto something different. Who knew taking them at an entirely different time of the day would help so much.

Hi Janilee ...Good to see you here ... {{{HUGS}}}

Marilyn


09/24/2008 05:42 PM
kshomeschoolmomma
kshomeschoolmomma  
Posts: 14
Member

It seems that a lot of people are taking Lyrica and I have seen a few TV ads for it lately. The rheumatologist said they could do injections in the tender points (yeah RIGHT! just his finger touching those areas made me cry and get sick to my stomach). He said that he didn't recommend it since the pain was widespread. My general practicioner said to ask him about a couple of meds and that if for some reason he didnt want me to take them, then the GP would have me try them. I've been dealing with the pain for 3 years now, so I have learned some coping strategies, but this 2 hours of sleep a night really does a number on me.

09/24/2008 06:16 PM
nhlflagg
nhlflagg  
Posts: 261
Member

Welcome schoolmomma, there are a lot of people here that will be able to answer a lot of you questions. You can also go back and look through the posts and see what has been written before and get some answers from there too. You can also PM people any time.

I take Neurontin instead of Lyrica, my insurance would not pay for Lyrica untill you tried other meds first but the Neurontin seems to be working good for me. I also take a muslce relaxer and pain meds too. You need to find a mix that works best for you.

Good luck and welcome, if you have any questions or you just want to talk you can PM anytime.


09/24/2008 06:27 PM
kshomeschoolmomma
kshomeschoolmomma  
Posts: 14
Member

Neurontin is the other med that my GP wanted me to ask the Rheumatologist about. Can you give me some general info on what it is supposed to do and any side effects?

09/24/2008 06:40 PM
Auntie3285
Auntie3285  
Posts: 9182
VIP Member
I'm an Advocate

Michelle ,

As with any meds it is best to talk over openly and honestly with your dr., what they can do for each of us individually as well as what we can expect of them. (I carry a small pocket sized notebook in my purse to jot down questions and thoughts as I think of them to talk to my PCP and Rheumy prior to all appts. I also jot notes from each appt. so I don t forget what they have told me.)

Some here cannot tolerate Lyrica ...it just so happens that it works for me so I can say I like it.

The Neurontin mentioned, I only know about it what I read here.. I have never taken it .

The injections you mentioned I can say (depending upon what exactly they are/were) definitely helped me. When I went for my initial consultation with Rhuemy, he found (touched) trigger spots that even I didn t realize I had (and PCP hadn t delved far enough to find them). My first appt with Rhuemy my worst complaint was severe soreness and pains at the base of my neck and across my shoulders.

Rhuemy mentioned (possible)shots ...lidocane I think they were ... pretty sure they weren t cortisone ... whatever they were, they definitely relieved the pain and it s been 4 months since then . He says to just let him know when I feel that I might need them (one on each side of the base of my neck) again and we ll go from there.

The not sleeping at night I can honestly say I have not had to deal with since going thru my ""change"" ... those nights were the pits. I m sorry you can t rest .


09/24/2008 06:52 PM
Janilee

Hi auntie, you following me around?

09/25/2008 04:37 AM
Barbkubacki

I am one of probably many people that have trouble taking medications. I was on neurontin for years. It did nothing for me. I tried Lyrica and had to come off because of side effects. I have had the shots in my knees and it was very painful.
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