My life is changing -advice?

[Mothernature]

One last thought. If this is an Auto-immune disorder, I would ask for a blood test for other anti-immunity conditions. Anti-immunity conditions appear in clusters; you likely have a secondary undiagnosed anti-immunity disorder (R.A., Hashimotos, etc).

Others may be able to confirm. I believe once you are diagnosed with an anti-immunity disorder, you become high priority for the H1N1 vaccination.

[Hoshi]

Originally Posted by vickib50 I was given Lyrica for my fibromyalgia and it almost instantly, I mean, within a half hour, caused hallucinations and a psychotic episode. I repeated the experiment on 3 different days and got the same result every time.

Jeez!!
I only started taking Lyrica 2 weeks ago. The only thing it does is make me groggy. But it doesn't even help with the nerve pain... the klonopin doesn't really either, but at least it knocks me out. Sometimes it's only mildly painful and I can just deal with it, but when it gets really bad, I can't do anything. It's usually in my chest (on the left side - and I've had multiple EKGs to rule heart problems out!) when it gets really bad...it feels like an electric shock or lightening bolt through my chest. I can even feel it fork like a lightening bolt...it's that sharp!

I have a high pain tolerance...didn't even take the hydrocodone after I'd had my 4 wisdom teeth removed... but this is so, so much worse. When a bad "episode" of it happens, it's more than I can tolerate! I just wish the Lyrica helped me at all....


@ Mothernature
I was negative for RA factor and my ANA was normal Though I was diagnosed with hypothyroidism this past summer. About 3wks ago, I was in so much pain that I went to the ER... they did a CAT scan of my chest/lower neck and saw 2 nodules on my thyroid, which is kinda rare for my age. Had an ultrasound on them...they said they were hypoechoic and they want me to come back in 3 months to check for growth and see if they need to biopsy.

It's funny...this spring, I just took zantac for acid reflux. Now I'm on about 11 different medications! My roomie jokes that I'm a junkie now, lol.

[Mothernature]

Originally Posted by Hoshi It's funny...this spring, I just took zantac for acid reflux. Now I'm on about 11 different medications! My roomie jokes that I'm a junkie now, lol.

I understand. I went for a blood test and *poof*.

[Castingbread]

My daughter had a few of your symptoms and at 14 they found she had Chiari Malformation and subsequent syringomyelia. She had decompression surgery then and has had great success for the last 10 years with few symptoms. Chiari is a actually a congenital condition which is not usually found until older. You may just want to google it to get some info so you can decide if it is possible and talk to the doctor about. It requires a brain stem MRI to diagnose. Here is one link with a definition: What is the Chiari Malformation?.

I hope you find the answer--I have lived with severe Fibromyalgia for years and know what chronic pain, exhaustion and weakness is like.

[wealthybarney]

Awww... I am sorry Hoshi--Hugs to you.
Did you know that if you are on 6 or more meds, that they all cause additional side effects from their interaction together?
I am aware about symptom management needs from complex medical conditions. But not one of us has a prescription drug deficiency.!!!!

When you said: "poof, 6 months later I am on 11 meds." Well, for that time you have been feeling more fatigued, and unable to do the activities of daily life.
Your whole life has been changed by the prescription drugs that were supposed to help you.
EVERYONE reacts differently to each drug given. We are all so different in our bodies' reactions, just like our fingerprints are all different.
Please talk to a female MD about what meds you can drop-IMHO, Female MD's take the time to listen.

[Hoshi]

Originally Posted by wealthybarney Awww... I am sorry Hoshi--Hugs to you. Did you know that if you are on 6 or more meds, that they all cause additional side effects from their interaction together? I am aware about symptom management needs from complex medical conditions. But not one of us has a prescription drug deficiency.!!!! When you said: "poof, 6 months later I am on 11 meds." Well, for that time you have been feeling more fatigued, and unable to do the activities of daily life. Your whole life has been changed by the prescription drugs that were supposed to help you. EVERYONE reacts differently to each drug given. We are all so different in our bodies' reactions, just like our fingerprints are all different. Please talk to a female MD about what meds you can drop-IMHO, Female MD's take the time to listen.

I don't think it's from the meds. If I forget to take any of them (except for Lyrics, which I stopped taking), I feel HORRID within a few days if not sooner.

The symptoms started a few years ago, but have been getting worse and worse. A few new ones came along as time went by, but the initial fatigue and weakness has been here for about 4 years now, maybe 5. Then I'll have some sort of flareup where it gets a lot worse for a month, then it gets better. Never quite as good as it was before the "flare up", but better than during it. I think I had just about a year in between the first one and the second one....then less and less between them as time went by.


Got a neurologist appointment on the 10th, so I'll see how it goes.

[loaslaen]

Originally Posted by Mothernature Having a chronic illness myself, I understand the benefit of help and care. My intent was not malicious. I understood Selah offered support as she knew best. However, it came over to numerous people (as shown by the amount of reps and pms I received about that post) overtly religious and proselytizing. I think there needs to be a bit more sensitivity to other religious beliefs-- if any of this should be discussed on a coupon board anyways.

Any of what? religion or medical conditions? Why is religion always singled out as "shouldn't be discussed on a coupon board"? Seems like "anything goes" on the coupon board EXCEPT religion. Sounds like just an excuse for people who don't like Christians IMO.

Anyway....hope OP finds comfort....physically and spiritually.

[cori n wes mom]

((HUGS)) hopefully the neurologist can help you out. Try to have them rule out as much as they can.....and hopefully they can rule something in.

I too would look at the chiari malformation, and fibromalygia. Have them do a full metabolic work up as well.

If your able to get a concrete dx and are unable to work and $$ is an issue...you need to look into qualifying for SSI Social Security Online - Apply for Disability Benefits

As an adult...depending on the state it can take months or years to qualify...but qualifying means you get disability from the feds and medicaid from your state if needed. Just start out as soon as you can....you will likely have to appeal it a few times and some even have to resort to getting an attorney.

[Hoshi]

Goodness...it's hard to even think about SSI. I'm 20 year old.
But we'll see how it turns out. Maybe I'll have something that can be treated.

On the bright side, I really have had a stroke of luck. (Dunno if I told you guys about this yet). I turn 21 on the 16th of this month - which meant I was going to lose my state-provided insurance....and I've no other way to get any.
One night I was just really upset and feeling horrid...I'd looked all over and found nothing I could do about my insurance going away. On a whim (more to get my emotions out than anything), I sent an email to Phil Bredesen, TN's Governor just saying that there was no options for students on TNCare when they turn 21, and they have to make the choice to drop out or to just be sick and not go to the doctor. I gave my little sob story. I didn't expect a reply or anything.
The next day, I got a reply.... it said he forwarded it to DHS. So I just assumed it would be ignored and I forgot about it. I hadn't expected even a reply.
I soon got a phone call from DHS telling me they'd reviewed my case and renewed it another year because of the email I sent to him.

Holy. Freakin. Crap.

Then, I got another email today from someone at DHS...and not a "form letter" or something automatic. It mentioned how they had recieved the email and that they'd reviewed my case and had someone (they actually put the worker's name down, and it was from their main office!) call me. The email just said that they hoped it was helpful and that she gave me any info I needed. It went on to give me a phone number, telling me that I could feel free to call, and that they could help me find out if I could get assistance on rent, utilities, food, emergency services, or, weirdly enough, "weather proofing [my] home" (I'm in an apartment, haha). After a quick google of the number, I found out that it isn't a public number. It's a special line to some higher-ups at the Nashville DHS office. How cool is that?!?!?!
I probably won't try to get any of that since I prefer to manage on my own when I can, but still, wow! I'm pretty amazed. I never expected any help to come from that email, and especially not personal attention from people at DHS' main office. I need to send a follow-up email and tell them how greatful I am! :D

[Kristen.C]

Originally Posted by Hoshi Goodness...it's hard to even think about SSI. I'm 20 year old. But we'll see how it turns out. Maybe I'll have something that can be treated. On the bright side, I really have had a stroke of luck. (Dunno if I told you guys about this yet). I turn 21 on the 16th of this month - which meant I was going to lose my state-provided insurance....and I've no other way to get any. One night I was just really upset and feeling horrid...I'd looked all over and found nothing I could do about my insurance going away. On a whim (more to get my emotions out than anything), I sent an email to Phil Bredesen, TN's Governor just saying that there was no options for students on TNCare when they turn 21, and they have to make the choice to drop out or to just be sick and not go to the doctor. I gave my little sob story. I didn't expect a reply or anything. The next day, I got a reply.... it said he forwarded it to DHS. So I just assumed it would be ignored and I forgot about it. I hadn't expected even a reply. I soon got a phone call from DHS telling me they'd reviewed my case and renewed it another year because of the email I sent to him. Holy. Freakin. Crap. Then, I got another email today from someone at DHS...and not a "form letter" or something automatic. It mentioned how they had recieved the email and that they'd reviewed my case and had someone (they actually put the worker's name down, and it was from their main office!) call me. The email just said that they hoped it was helpful and that she gave me any info I needed. It went on to give me a phone number, telling me that I could feel free to call, and that they could help me find out if I could get assistance on rent, utilities, food, emergency services, or, weirdly enough, "weather proofing [my] home" (I'm in an apartment, haha). After a quick google of the number, I found out that it isn't a public number. It's a special line to some higher-ups at the Nashville DHS office. How cool is that?!?!?! I probably won't try to get any of that since I prefer to manage on my own when I can, but still, wow! I'm pretty amazed. I never expected any help to come from that email, and especially not personal attention from people at DHS' main office. I need to send a follow-up email and tell them how greatful I am! :D

That's amazing! What fantastic news!