Well, it was short lived

[flutterbee]

The pain is back though not as intense as it was, but definite aching and burning. Like I said, it's not near as bad and I can deal with this.

Saw the rheumy today. He said he can tell me what it's not. It's not lupus and it's not rheumatoid arthritis. He had done the bloodwork to check for the genetic marker for Ankylosing Spondylitis at my first appointment with him and when he didn't say anything about it, I figured it wasn't there. After talking with him again today, he wanted to run that test and I told him he already had. Turns out the sample they drew wasn't any good and they never got the results. So, they ran that again today.

He said I have fibromyalgia and that could also be causing the cognitive issues. While I think it's possible that I have fibromyalgia in addition to whatever else is going on, I don't for one second think that's all it is. I have too many symptoms that don't fit. I don't think he's thinking that's all I have, either. I'm trying to remember how he put it. Something along the lines of 'you have fibromyalgia going on with all of this'.

So, it's still up in the air. He did give me an rx for Lyrica and I'll see how that works. I go back in 6 weeks. I have the EMG with the neuro on the 25th.

 

[Shari]

I'm sorry it returned, but I hope you enjoyed your "day off" to the max.

Hopefully the new medication will offer some releif, especially since its already not as bad as it was.

hugs.

 

[flutterbee]

I'm hopeful that the new medication will help, too. My GP and I have talked about this medication, but we haven't tried it yet.

I looked up the symptoms again of fibromyalgia and I don't know. Maybe that's all this is. Some of the symptoms that I thought didn't fit were listed as symptoms of fibro. I guess we'll just have to see.

The only thing I did today was go to the rheumy appointment. And easy child drove (he's on Spring Break). It's 45 minutes away. I was at the appointment for an hour. And I'm exhausted. LOL

Ah, well. I'll just have to adjust.

 

[meowbunny]

I'm sorry the pain is back but glad you had two days' of rest from it. I hope the new medications keep it at bay, at least somewhat.

(((((HEATHER)))))

 

[Hound dog]

(((hugs)))

I'm sorry the pain relief didn't last. Hopefully this new medication will be helpful.

Something along the lines of 'you have fibromyalgia going on with all of this'.

I hate it when docs do that. Usually I try to pin them down as to what they're thinking, even if they're thinking it's only a remote chance. lol But then I can be a pest, cuz I have a driven need to know what's going on in their heads.

Hopefully this sample will be good and you can have a yes or no on this test.

Hugs

 

[Wiped Out]

I too am sorry the pain is back but am glad you had some relief.

 

[flutterbee]

We did talk about other things, but with my memory issues most of it was already fuzzy by the time I left the office. I think he was saying this is something I'm certain you do have - whether it's in addition to something else or not - and something we can start treating.

The HLA-B27 marker for Ankylosing Spondylitis would be good information to have, but it's not definitive. Nearly 90% of people with AS have that marker, but not all do. And 8% of the population have that marker, but only 1% of the population have AS. However, the hallmark of AS is pain in the lower back and sacroiliac joints which I've had since childhood. During most of my adult life it was not incapacitating, although it was always there to some degree. I just worked around it. So, I've done my research and have found studies that suggest there are other ways of trying to identify AS in those that don't have the marker and don't have any joint damage yet. He did say if that test comes back positive he's going to fight hard to get the spine MRI that the insurance company nixed. And if the test comes back negative, I'm going to ask to have these other tests run.

On the other hand, I'm not comfortable with him dismissing the positive ANA test (which indicates autoimmune) as nothing. Some people do have a positive ANA and don't have an autoimmune illness, but they typically don't have any of the symptoms either. He was talking today about the HLA-B27 marker and what it would mean if it were present and said, 'If I were a betting man....' and I meant to bring up the ANA at that point and got sidetracked and forgot. So, that will be my question at the next appointment.

I don't feel like he's dismissing me. I think he's a good doctor. And I think I'm hard to diagnosis. Plus, I just have a lot of questions. I've done my homework and probably have more test specific questions than he's used to having. But he does answer them and doesn't get annoyed at the questions like I've had some doctors do. I feel comfortable working with him - even if he gets it wrong at first. LOL Because he'll listen to me. And while trust is very hard for me, I'm going to have to trust him. I think that's the hardest part for me in this part of the process. I've so often just been dismissed. But, I really don't feel like he's doing that.

And I've already taken my lunesta and am starting to ramble. So, I'll stop now.

 

[Big Bad Kitty]

I really hope that the Lyrica works for you! I've just recently heard of it.

 

[timer lady]

It was fun while it lasted, huh? Sorry, didn't mean to be so tacky. My mama raised me better than this.

I'm glad the pain isn't back to the degree it had been - I hope that you have answers or at least a viable treatment plan soon. I know your frustration very well.

Keeping fingers crossed that you have a good & relatively pain free day today.

 

[DammitJanet]

Sorry Heather...it bites when things start to get worse again.

From what I read of your symptoms they do match fibro quite a bit. There are some very sick people with fibro. Sometimes I have a problem figuring out which parts of my pain are from which...fibro or the arthritis. I also get so mad when tests just keep on coming back negative or inconclusive. My ANA has come back positive before and they chalk it up to the arthritis. Got no clue what it is right now because when I asked them to do the arthritis panel in the fall all they did was the RA factor...sigh.

Lyrica can be very good. I did feel better when taking it but had some side effects that I just couldnt live with so I had to go off it. Hopefully it will work well for you.

 

[flutterbee]

Really no pain today. Yippee! But so tired. I would love to stay in bed all day. Before forcing myself to get up, I was imagining how nice it would be if the kids weren't here and I could just stay in bed and sleep until I'm rested. I haven't felt rested in forever it seems. It's been at least a month anyway.

So, here are the symptoms I found and I have every single one of them. Except for the painful periods because I don't have periods. When I did have periods they were painful, but that's because of endometriosis.

http://www.webmd.com/fibromyalgia/guide/understanding-fibromyalgia-symptoms

The thing is, I do have actual swelling. I've been thinking ankylosing spondylitis since I first read about it in November.

But, honestly, I don't care right now. I just want to sleep. Wake me in about 20 years.

 

[Hound dog]

I am sooooo glad there was no pain today.


If I ever get some spare time I am going to read up on ankylosing spondylitis. I've done some reading on it, but would like to do more. I'm kind of weird that way. I like to learn about uncommon things. And there have been times when it has eventually come in handy.

I hope you get some good sleep and a chance to catch some extra rest, too.

((hugs))

 

[Marguerite]

Fibromyalgia is primarily a description, although lately it has been seen as a condition in its own right. But really, it's not much more than description. Like "neuralgia".

That doesn't mean it's not capable of creating major havoc.

It sounds very similar to what I'm dealing with (which symptomatically also includes fibromyalgia) but you've got other stuff happening for you that's different from mine.

If you haven't already, try and find a pain specialist who can help you find ways to keep the pain under control. The doctor I see runs a palliative care clinic, a lot of his patients have terminal cancer, but even though I'm not in imminent danger of dying, it's still appropriate for him to treat me also. husband sees the same doctor, different symptoms and different medications.

Currently I've got my pain under control which means I can function really well. It does mean I can't visit the US though, because what I take isn't available there or approved by FDA, so I'm not allowed to bring it in with me either. Darn. There are related medications, but I'm allergic to other ingredients in them. Darn, again.

Hang in there. I think it's good t hat your doctor is prepared to say when he doesn't have the answers. It's far better than a doctor who takes a wild guess purely to give you an answer, even if its the wrong one.

Marg

 

[Abbey]

It does mean I can't visit the US though, because what I take isn't available there or approved by FDA, so I'm not allowed to bring it in with me either. Darn. There are related medications, but I'm allergic to other ingredients in them. Darn, again.

Gosh, Marg...you could try the bra technique. Just pack the medications in. We'll have a party!!:crazy1:

Abbey

 

[Marguerite]

Abbey, my bra is big (daughter), but not THAT big! Not even if I had a double mastectomy, to make room. Every month when I go to the pharmacy to collect another month's supplies, I take a large calico bread bag (the ones my 10 Kg sacks of bread flour come in). Because of my 'lovely' stalker still living in town and gossiping about me every time he gets ANY info, I obviously don't want anyone in town (apart from the pharmacist of course) to know what medications I take. It's tricky, when there is such a large volume of it all.

Do you get those vinyl picnic cooler bags over in the US? We got given one by KFC years ago, the sort you could pack several dinner boxes in to each side (double-sided, collapsible when empty). husband & I take it with us when we're going on holidays, we use it to carry our medications. It's our working supply. But my medications no longer fit in it with everyone else's, I have to put my bulk supply in our big bags and carry just a couple of foils in my day pack.

(by the way, what do you guys call those small packs you wear around your waist? You know, when you're on holidays you put your passport in them, your cash for the day, your credit cards, and they can't be easily grabbed by a thief running past. I suspect what we call them wouldn't get past the site censor, although husband says it's not a swear word for you guys - "bum bag". There are other names which are even more likely to get censored, but they're very useful bags.)

Marg

 

[Abbey]

They're called 'fanny packs.' I can pick a tourist out in a second if they wear one.

Abbey

 

[Marguerite]

I'm not a tourist and I wear one. But then, that's because I walk with crutches. One crutch, anyway. A shoulder bag is a pest because it bangs against the crutch and a handbag means I have no free hands left.

So bum bag it is.

But sometimes around my waist it is uncomfortable because it presses against things that hurt. And some days all of me hurts.

Marg

 

[Tiapet]

Just catching up with you. Been gone a couple days due to spring break with kids (chaos) and a quick trip north plus I've been seriously down with pain and not able or up to anything or anyone.

I can't believe they didn't do the test. It is very common for Fibro to be comorbid with AS. I learned that after the fact. I received the Fibro diagnosis about a year after the AS diagnosis. I really do hope they figure out if you have the AS or not because the swelling/inflammation is horrible (at least in my case). It seems AS can progress pretty fast also sometimes. Since I received the diagnosis I have progressed so rapidly it isn't funny. Stress is a kicker too, like with all auto immune diseases. My AS is from my cervical spine (not to be confused with cervix ladies! lol) all the way to lumbar. It also has now spread to hips and knees. It is classified at moderate working towards severe but as of yet I have no fusion. I'm told that once fusion occurs you do loose a lot of the pain however. Great but you are fused and no mobility! (I already have serious mobility problems now)

I would not be comfortable if my doctor dismissed a positive ANA either. That is a big clue that something IS going on. It's kind of like when they told me that even with the variety of tests they do for Lupus (since it's not just a single test) come back negative, it may still not mean you do NOT have it if you are displaying symptoms. It is a hard disease to track down. History is usually something they can use to help diagnose. At least this is what the experts at Duke have told me.

I won't kid you, having AS su*ks so if you don't have it be happy but having answers is better, I agree.

Hang in and find that soft place for you when you can and find comfort. Keep pushing them for the answers! {hugs}