Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Shingles help

Hi Wimp,

So sorry for shingles. My unlce had it and it was real rough. Hope you feel better soon kido.

Ali

So I didn't take my vacation. The shingles pain is so intense, I couldn't get on the plane, or out of the house, for that matter. I didn't even think this level of pain is possible. Sorry again for the whining - I know everyone here deals with extreme pain, and I don't mean to come across as thinking my pain is worse than anyone else's.

To recap:
Jan 18 - weird shoulder pain started
Jan 23 - GP apt - prescribed rest
Jan 25 - to the ER with rash, diagnosed with Shingles, started a week of antivirals

In the past 2.5 weeks, the pain has been getting worse by the day (rash is nearly healed up already). I'm taking loads of morphine, muscle relaxants, amitriptyline, ativan, and gravol. I've been on enbrel and prednisone for god only knows how long now.

At the ER visit, they didn't really know what to make of me being on prednisone and enbrel, and told me to talk to my rheumy about it. I've left him a half dozen messages since the ER visit, and he finally got back to me today, and left a message saying he didn't know either, and to have a good day. At one point last week, his nurse did call me and said to maybe skip a shot, which I did, but she wasn't too sure either.

I've been calling my GP like crazy also since the ER visit (because his office is an hour drive away, and I can't drive on this amount of meds). Glen's still out of the country, but has also been calling my GP on my behalf. Eventually, completely frustrated, Glen had a friend stage a sit-in in his office to get the guy to actually call me back. Which GP did, and GP didn't know what to do either. He did say he'd call in a script for Lyrica for me, to the nearest pharmacy for me. And that call never happened, so no Lyrica for me, I guess.

I'm losing my [**BLEEP**]. Fast. Does no one hear me? I mean I'm crying to these doctors on the phone, and they just can't be bothered. I've called and called all sorts of different clinics, ERs, everything I can do from home, because I can't drive in this state.

I'm loaded on meds, and they barely take the edge off. But I'm going to run out of those meds, and my doctors won't give me the time of day. I'm ready to scream. The pain is not in my head - I can hardly get out of bed now, and I'm so scared this is going to last, because from what I've read, if you don't control the nerve pain ASAP, it can become permanent. This is insane. Glen is going out of his mind too. We keep talking about coughing up the $3000 to go to a private clinic, or him flying home just to pack me onto a plane to take me to the US where at least we could pay to see someone. We're that desperate.

I need HELP

i wish i could help you from here.
i'm so sorry.
don't apologize in any way.

i've never had shingles so i don't know what to suggest for such terrible pain. i'm not sure what i would do in your situation.

i feel like i'm saying the same things the doctors are saying,
when i say i'm sorry, but can't help.

i had no idea shingles could be so bad.

sue

Hi Sue, I know you have more than your fair share of problems too, so sometimes I feel sheepish asking for help here. You know what I mean, I hope. Thanks for your reply though, I really, really appreciate it.

I didn't think Shingles could get this bad either. To quote my best friend, "It's just a rash. What's the big deal?"

Because it is so bad, and covered so much of my body, and I'm on all sorts of immune suppressants - that's exactly why I'm concerned.

A neurologist would be handy to talk to, but that will be months. (I actually have an URGENT appointment set up with a neurologist for a seperate problem already - for AUGUST!!!! ARGH).

I just can't handle this level of pain.

Megan

I am so sorry to hear that you are going through this. I know nerve pain can be terrible. I have never had shingles, but I have had nerve pain that could drive you crazy. I wish I had some advice for you. I've been given the run around by phone before, but never to that extent.

Please keep us updated. Don't give up. I don't know how the medical system works in Canada. Feel free to complain here all you want---I don't think you're being unreasonable at all. I feel for you being alone in the house in that pain. I hope you feel better soon!

Aly

Hi Megan,

Me again. I mentioned that both my mother and my son have had shingles and I do remember them both being in terrible pain. And they weren't on all the immune system suppressants that you have. Both relied very heavily on pain meds. It lasted weeks but the pain began to recede after about the first three weeks. Neither had the anti-viral meds because they were both told that those are only effective if you start them within 72 hours and it took longer than that for them to figure out what was wrong.

Both made it clear that the visible rash in no way did justice to the pain levels - it didn't look like much from the outside. My son took to wearing a big mumu because he couldn't bear clothing to touch his skin. I think he also smoked a lot of pot!

I don't know anything about the risk of shingles when you are on immune suppressants but someone should.

I'm so sorry you are going through this but won't send you hugs - that would hurt too much. I'll send powerful healing thoughts instead.

Update:

I just did some research and the following link gives a lot of information:
http://www.uptodate.com/patients/content/topic.do?topicKey=~I8yIhDRR.lB0.y

However, it's not encouraging. I hope it won't scare you. My suggestion is you take this information to your doctor, clinic or whoever and use this to help get some attention.

After reading this, I'm sending even more love and healing thoughts.

Hey Megan, I'm so sorry to hear you're still in such discomfort and having these 'difficulties' getting answers. Have you called Enliven to hear what they have to say about this?

Warm and very gentle hugs,

don't ever feel sheepish about asking for help here, but i think i know what you mean from my end.....after reading about the pain you've been having and the terrible visit that trudi had yesterday with the doctor, it makes me feel like i shouldn't complain.

now that its a new day, i hope you're able to get some help today,

sue

Thanks so much Wendy. I think I needed to hear that. Most people I've heard who had it said the pain left when the rash left, so I was beginning to panic. If this lasts a month or two, I can handle it, but pain like this for years is not something I'm prepared for. Sure hope mine only lasts a month or so.
I have just had so much go on in the past year, that I'm thinking my thesis is never going to get finished. And I'm sure the coordinator of the program is convinced I'm making up all these wild and weird diseases that I get. Really, this isn't in my head. I would MUCH rather be on vacation in the sun right now, as planned. Getting out of a final exam, I agree, might look dodgey, but skipping vacation with my man, is not something people try to get out of.
I can just imagine your poor son spending weeks in a mumu, smoking, trying to ignore the pain. The poor guy. I have one shirt I can tolerate too. And I'm sure if I was presented with something to smoke that would guarantee to kill the pain, I'd be mighty tempted to light up. lol
Thanks for the link. I've read that one, and it's less scary than what I've learned in my lectures in Fac of Med.
Thanks for the healing thoughts too. I've upped my amitriptyline, and it seems to be helping with the pain. Or keeping me really drugged-feeling and stoned. Either way.

Megan,

This sounds horrible. I am so sorry.

I am not a doctor and have no medical knowledge.... but ... this sounds like a really extreme case of shingles and I think you should go back to the ER.

If the only time they saw you was on Jan 25, didn't it get worse (spread) after that? Has anybody seen you (not spoken with you -- SEEN you) since Jan 25? You've finished the course of anti-viral by now and perhaps you need more or something else.

A coworker in my office just came down with shingles, and it is pretty bad (some on his face and scalp). He's seen various doctors 4-5 times in the last couple of weeks. He is healing well, but I don't understand why you seem to be getting so much less medical care than he was given. Ontario shouldn't be that much different than Alberta.

Please go back to the ER. If you can't drive, get someone to take you, or take a taxi. At the very least, they should be able to do something about pain management.

We care about you. Don't play games with this.

Regarding enbrel and shingles, I found this question on the John Hopkins site. They recommend stopping the Enbrel, at least until everything is completely healed over:

http://www.hopkins-arthritis.org/ask-the...nbrel-1079.html