Hints & tips to prepare for surgery when you're living with FMS

Symptoms & Treatments
1

Hi Friends,

I've been off the forums for a while because of some other problems that culminated in my having half my thyroid removed this past Monday. I just got the good news that there's no cancer in the biopsies, but that's not the point of today's note.

The surgery ordeal I just went through made me search our discussions for tips on how to deal with the hospital staff and doctors when planning for surgery. I couldn't find much, so I'd like to start a discussion where FMS folks who've dealt with surgery can share their suggestions.

Besides FMS I have Diabetes and PMR (Polymyalgia Rheumatica). I found that as long as I made my diabetes concerns clear to my surgeon and anesthesiologist, the hospital staff were very good about checking my sugar readings frequently and giving me insulin when needed. They also put me on a saline IV with no glucose, which made things much better to control. Now that may not seem like anything more than common sense, but none of that checking happened when my dad was hospitalized several times back in the 1990's, and I believe lack of diabetes control in the hospital contributed to his earlier death. Thank goodness hospitals seem better prepared to deal with diabetes today - as long as you make them aware in advance.

I think we're at about the same stage with Fibro in hospitals today that we were with diabetes 20 years ago. The pharmacy/nurses never seemed to get my FMS meds right. I finally got to the point when they'd come in and ask about pain, I'd give them 2 numbers, one related to the surgery and incision, and the other related to my Fibro, which started flaring about the time I came out of the anesthesia. My Surgeon and my Hospital doctor were both smart, caring individuals, but neither of them seemed to understand just how much of the pain that kept me awake all night after the surgery was from a fibro flare, even more than the incision.

I'm home now, back on my regular timing of Lyrica and Cymbalta, and feeling much better. I get my stitches out next week.

But I was wondering . . . does anyone have suggestions for how to make sure your hospital is aware of how to monitor and deal with FMS when you're in for surgery or some other reason? Anyone have good or bad experiences to share?

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This is a really great discussion topic, Silicon, but not one that I have experience with. But what with many of us also having sleep disorders plus C-PAP machines, it's something we all need to be aware of, since in some cases you're told to bring the C-PAP with you during the procedure (I noticed this on an earlier surgery.) So like you, I'd love to know what others have to say on the topic. Are we such worried consumers that we fear to even ask for treatment for the fibro while we're in the hospital?

Your two numbers approach is a very smart and practical one. I've never thought about what I'd do about my fibro if I were hospitalized. I almost think that we should wear special medical alert bracelets on our arms alerting people that we have fibro, in case we can't say it ourselves.

Wow. So much to think about here. Thanks for starting a very good topic.

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I had surgery about 5 months ago and my fibro symptoms disappeared completely after the surgery. Don’t know if this was because I was on IV pain meds the whole time (8 days) I was in the hospital, because I didn’t move around much (wasn’t allowed to get out of bed for three days), the lingering effects of the anesthesia (I was under for 4 hours) or what. But about four or five days after I left the hospital, fibro came back full force. So who knows?

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Dear SVC,

So glad that the surgery went well, and that there is no cancer! What a relief!

You have brought up a very good and valid point about trying to make your Medical team understand that it was not just pain from the surgery that you were dealing with. I do not understand why these professionals cannot make themselves more aware of all of the aspects of fibromyalgia, considering it is so prevalent.

My Rheumatologist assured me that my Psoriatic Arthritis is much worse than my fibro, but I let him know that the worse the arthritis is, the worse the fibro is. Speaking of this, it is also difficult to make some medical professionals aware of the challenges of being on an immune suppressant. These wonders drugs can really slow down progression, but leave us so vulnerable to infection and illness that make it very difficult for our body to fight.

On the way home from the Rheum, I got a call asking me to review my recent trip to the ER for a fall. I was glad to do it. I was happy to tell her how good the Dr was, how surprised I was that he was familiar with all of my rare diseases, and all the meds that I take, same for my nurse. They were also very caring and respectful of my conditions.

I also gave high marks to the ladies in radiology, but made it clear that if you could get past the rude women who run the front that you are in good hands. I told her that in my opinion I would not want them being the first impression of any of the businesses that I have owned, managed or worked. That even though they may know their job, their attitudes, and lack of respect were inexcusable.

I believe that they thought I was a 'drug seeker', so I made it very clear early in, that I was there to be checked for broken bones, fractured skull, that I was not seeking pain meds, that I had my own, though I had chosen not to take any before being examined. I had to make quite an effort to be more respectful to them than they had been to me.

If the hospital cares enough to hire a company or employee to call and ask, that I care enough to let them know.

I hope that the surgery will make a difference in your health, that the results are lasting and your recovery is swift and complete!

Thanks for posting!