Almost Diagnosed

[SulaBlue]

So I've had doctors say "Well, it could be Fibromyalgia. Here, you should try this Metanx stuff." It's basically a B-vitamin food supplement that costs an arm and a leg and is marketed for diabetic neuropathy, not fibromyalgia.

Another doctor did some blood tests and said "You have non-specific inflammation. It's not Lupus (Thank you, Dr. House!). Go see a Rheumatologist."

In the meantime I end up going to a consultative exam for SSD, and the trigger-point touch test leaves me in tears with the doctor begging me to stop crying so he can complete the exam. Hmmm.

The Rheumatologist wants to rule other things out and has taken blood for blood tests. I don't even know what blood tests. I was too out of it to ask. All I know is that she took 5 vials! She's also ordered 3-view X-rays of my hands, wrists, feet and ankles to "rule other things out" - I'm guessing Rheumatoid Arthritis. She gave me samples of 75mg Lyrica and they left me loopy. It's also just not in my budget, even at $25 a month. She's now substituting gabapentin 300mg 2x daily as a starting dose.

I've been in SUCH a fog lately, and the Lyrica has left me even more so. Here's to hoping the gabapentin is a little less brain-draining and that I get some sort of clear diagnosis soon.

 

[1sweed]

Sulsa Blue,
The gabapentin takes a bit to get used too, but it is good for pain relief and works well with other medications. It is strong, but good. I have taken it at higher doses, but now reduced to 300mg, 5 a day. Give yourself time to adjust to it. It will make you kind of tired at first, but that wears off as your body adjusts to the dosage. It is often used for pain, as well as, seizure medication. But has far less side affects then other drugs.

Let the doctors do their tests within reason. If the costs get to high remember you can say no, and explain that you can not afford it. Hope they figure out what is wrong and also hope you feel better soon. We are here for support and friendship so keep coming back and maybe the posts here will give you some ideas on handling your pain.

 

[SulaBlue]

300 mg 5x a day? She's starting me at 300mg 2x a day. She started me originally on 75mg Lyrica 2x a day which I am hearing is just way too much to start with. I can deal with being sleepy. I would LOVE to be sleepy. The insomnia really started kicking in about 6 years ago, but it hit a peak within the last couple of years. I have tried Ambien, AmbienCR, Lunesta, one other, and Temazpam. I can take 2 Temazepam and not even be drowsy. Wellbutrin has helped as it helps the ADHD part of my brain /shut up/ - which is one reason I'm worried about changing over to the way more expensive Cymbalta - it won't help with that, and Wellbutrin's the first thing in years that's actually kind of helped. I've tried meditation, baths, not eating before bed, eating before bed, exercise, no exercise, 'sleep hygiene' all to no avail. This is how my sleep log for the month looked:

Sleep Log
3/01/2013: Woke: 8:30 am (Went to bed around 5 am night prior)
Nap: 12:30
Woke: 4pm
Sleep: 5am

3/02/2013 Woke: 11:00 am
Woke with: Massive headache & severe lower back pain.
Sleep time: roughly 6 hours
Nap: None
Sleep: 5:30 am

3/03/2013 Woke: 9:30 am, 10:30, 11:30
Woke with: Weird vivid dreams typical since I started Wellbutrin.
Sleep time: roughly 4-6 hours, interrupted
Nap: 3:30 pm
Woke: 8:15 pm
Attempted Sleep: 6:30 am, gave up at 7:30 am

3/04/2013 Woke: Did not wake this AM
Sleep Time: Zero during normal hours.
Nap: 1:00 pm
Woke: 4:30
Woke with: woke in a sweat w/ headache & shins burning. Hands & Feet stiff. Hip and shoulder hurting.
Attempted Sleep: 2:30 am. Finally slept around 4:15 am

 

[Yatte]

Sula, I hope they make your diagnosis soon. The relief of finally knowing what the problem is, helps you cope with all the tests and trails to find the solution. The finding of the best medication is by all means a trail and error process, it is difficult to go trough but in the end you find what works best for you. trust your doctor to make the right judgments and just keep going. It will get better as soon as they have it figured out.

 

[SulaBlue]

Thank you, Yatte. You're so right, it's just all physically and emotionally draining trying to deal with al this bureaucratic red tape between SSD, Lawyers, Doctors and Insurance.

 

[KimberlyJ]

I take Gabapentin 2 times a day (100 mg). My Rhuem told me it is better to start slow and work up than to throw me into higher dosages because in his experience, starting people out to high made things worse rather than better. Perhaps you should ask to start smaller?

I suspect an increase in my dosage on my next visit. It works well when I am in the office. If I am out as cashier or running trays, I begin to feel all the achy stiffness and soreness come back almost immediately. It's the same with everyday life. I try to shop or clean...I know I'll feel it soon.

Good luck to you! My doc told me, "Stay patient. This is a long road without a miracle pill. It's trial and error til we find what works." I hope you get relief soon!

 

[SulaBlue]

Kimberly,

Thanks

I switched from the Lyrica to the Gabapentin last night. All I can say is *WOW*. So far, the side effects are way, way, way better than the Lyrica. *cough cough*. I felt a bit tipsy/floaty/tingly (*ahem!*) physically, but mentally I was very clear. It only lasted for a couple of hours but it was rather er... pleasant.

 

[1sweed]

I was trying to remember to back when I first started with the gabapentin, and realized at first on a low dose I suddenly felt great. A lot of the symtoms I had vanished and I felt like a new woman. I had some energy again and was able to work a bit better. Of course that was 1995. I had ups and downs, new medications added then taken away. It has been one long ride.

It also seems the more stress your under the more really scary and weird symptoms can creep into your life. The not sleeping, just those dumb forms fro SSD, can drive anyone crazy. I often wonder who in the world made up those forms, that ask the dumbest questions. Maybe it was the same folks that had to tell the woman who spilled coffee on herself, that the coffee is supposed to be hot. And getting the same form with the same boring questions, SulaBlue, its a wonder your not in the corner screaming. It drove me crazy and I was half sick all the time worrying about it. But just try to trust that it will work out and life will be on a even keel again.

I hope this made you smile for that was what I intended. Let us know how things work out. Look you got 2 smiles!

 

[SulaBlue]

Saw the Rheumatologist today. X-rays were clear. White blood cells and platelets are up and she has recommended seeing a hemotologist "at some point" but says it isn't urgent. C-Reactive Protein is also elevated. She says it's not lupus, lukemia or cancer - so that's good! She upped my Gabapentin from 300mg 2x daily to 300mg 3x daily if I want (She's all 'oh, just take 2 at bedtime if you want so you'll sleep really well!). I asked her so what was up with all my pain and she said, definitively, FIBRO. So, yay for that.

I also saw the Spine & Pain Specialist today. Somehow she accessed a CT scan from 2009 that I barely remember due to having bee hopped up on morphine at the time. I didn't even know she had access to that! Blessed be for living in the digital age, I guess! She says it looks like there's bone spurs on my vertebrae even back in 2009, and the x-rays look like I've completely blown a disc out. (Tell me again how SSD thinks I should be able to sit for long periods of time and hold down a job?). Now she wants a CT scan of my spine from shoulders to pelvis. Wheee... more $$. She's also referred me for physical therapy (massage/myofascial release, which is going to hurt like a son-of-a-gun) and aquatherapy. Yay for a warm indoor pool.

Now just to see if I can afford all of it!

 

[Libragirl67]

I have never heard of Matnex. But it sounds like it was not what you needed anyway. I hope the Gabapentin is gentle to you. Sometimes it is hard to take at first. I know the high cost of all these test and meds can be unreal. And yes it is very stressful. I am glad they finally diagnosed you and all your other tests came back negative. The aquatherapy sounds like it may be a good thing. Maybe even relaxing. I am glad things are getting better.

 

[1sweed]

I think the physical therapy may not be as bad as you think, unless you get some really zealous therapists. And the aquatherapy sounds delightful. I never heard of it, but maybe it is excerises in a tub or pool, that relaxes your muscles and helps pain go away. Anyways keep us updated on what they do to you, so we will know if we ever want to go through the same thing.

I used to take Gabapentin 300mg at 7 pills a day, but lowering my stress level has helped me deal with my health problems in a more safer fashion.

 

[SulaBlue]

Libragirl - The gabapentin was a doozy for the first day. I felt as high as a kite, and had some *ahem* more interesting side effects as well. Let's just say... I was tingly. All over.

Libragirl/1sweed: The Aquatherapy is going to be WONDERFUL. I'm totally looking forward to it (if I can afford it and manage to physically get there!). It is, as 1sweed expects, exercises done in water. When it gets warmer I can do it in the pool here at the apartment, but I tried the other day and it was ah... INVIGORATING... in a teeth-rattling way. But hey, you burn extra calories when trying to fight hypothermia, right? I just told the doctor I was working on getting exercise and dealing with inflammation via cold therapy at the same time and she laughed. She also said the pool at Warm Springs is, well, warm!

The myofascial release will do wonderful things for my back, but actually enduring it will be a teeth-gritting experience at times. I used to see a massage therapist who employed methods from Traditional Chinese Medicine and he did something that was a sort of modified myofascial release, and on more than one occasion I asked him if he was a sadist - he'd just laugh. They basically press into trigger points (yeah, that right there should explain the 'it's going to hurt!' part) with one hand and then use their other hand to press and stretch the muscle. It's kind of like pinning one end into place and then digging in and stretching it with the other. I was just watching a Youtube video and it talks about using 4-5 pounds of pressure. They're basically stretching the fascia, which is the connective "wrapping" around muscle groups (think... trying to stretch that 'silver skin' you see on meat that is tough and stringy and hard to get off). It's not a gentle thing, but it is very, very effective. It's something I can endure, though, as I feel better the 2nd day after. The first day afterwards I generally feel bruised. It's really funny when they get a triggerpoint to release though, you can feel the muscle beneath it twitching and trying to resist, then all the sudden just giving up and letting go.

 

[1sweed]

That massage your talking about sounds like the massage I had in physical therapy on my leg muscles. They would push against and up my legs to as you say release the muscles so they can relax. It hurt like crazy at first until, suddenly the tightness was gone and the leg muscles relaxed. I think they also used a form of ultrasound with some kind of tool they pressed against my leg.

I think I would wait for the warm pool. You don't want to turn into a ice cube, my teeth are chattering just thinking about it. lol

 

[SulaBlue]

Well, it did hit 90F here the other day. Just not for enough hours to warm up the pool!

I can handle the massage. Or, well, at least I used to be able to when I was getting it done but I haven't had it done in years, and that was pre-fibro diagnosis. At the very least, if I'm -expecting- pain, I can meditate and breath through it. The trigger point exam though was way more than I expected.

 

[1sweed]

Glad to hear things are looking up in that area of your life. Just having massages will do wonders for your muscles and the water in the pool will feel better when it is warmer. Hope you have a chance to improve some and enjoy that nice hot Texas weather. It is still cold in Pa. The snow melted with rain we got and now they are calling for more snow. I thought spring was on the way. April Fools Day! Right!