Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Can't take the pain

Cara,

I am picking up on two points that have been made here. First of all, to Maggie in Canada, I am very familiar with the pain, and it is not spasms. The back spasms are very different from the pain that radiates from the SI joints when one is lying in bed. As you have said, it is near impossible to move when one gets the pain in question. Personally, I had the pain this morning, when I had rolled from my side and onto my stomach - aaargh. I get the pain if I am too long on either side during the night. I get relief from combining the Celebrex and Neurontin (that is suitable for me, but maybe not suitable for others).

Second, Cara, there has been some good advice given regarding the use of antidepressants. I support that advice, because something like Zoloft or Flexeril can help by working on the centre of the brain where the pain message is being given. These drugs are given not so much as anti-depressants but to help relieve the pain.

It could be that you have secondary Fibromyalgia, and if it is secondary FMS then taking a course of anti-depressants might help to reduce the pain.

I hope that you will be feeling better soon.

MaggieinOz

Cara,

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I feel like if I were able to scream, stomp my feet, maybe throw a few things, that would relieve some of my frustration and anger.

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Let it out honey. Do the screaming....and throw something really inexpensive (I've learned my lesson on that one ) But the foot stomping?? I'm telling ya.... DON'T DO IT!!!! It sends the worst shooting pain up your calf that takes forever to massage away.

I do hope you are getting some much needed pain-free sleep tonight.

Hugs!!!
Pam

Hey there Cara,
I can relate to where you are, as can all of us AS Kickers. The last thing you are is alone. If you don't hit it off with the rheumy in town, can't you find another? I know how some docs can be. They get that holier than thou crap going and you just don't feel that you can trust them.

I know that for me stress is a big factor in some of my flares. And I know from some of your posts and a few IM's you have had more than your share of that over the past year. The weather in our region hasn't been the most cooperative either. This has probably been my worst 6 months in a few years. And I know its the last thing you want to do, but you have to get out of that house. Yes, it hurts and yes you don't want to, but it is the best thing to get back on track. Just start off watering those flowers, then walk down the street a little piece, just keep moving, I know it hurts. Thats the nice thing about AS, you always have an excuse, whether you are sitting around or walking. You move until it hurts and then you sit until it hurts. And it's also a great way to get one of those really nice ergometric chairs for the computer station..

AS for that laundry, I bet after a chat with Lon and myself on how to get 3 or 4 days out of what you have on your back when your camped on a moutain side hunting that big one, they will figure out that machine.

We need to get another KA get away going, its been too long, since we have all got together.


Hope things lighten up for you.
Keep Kickin'AS
Chris

Dear Cara,

I'm so very sorry to hear how much pain you're in. I don't think I've ever heard you complain about anything before, so it must be really bad.

I can empathize with the lumbar pain you describe, as I've been getting it, on and occasionally off, for many years. I don't think I've had it radiating into my abdomen tho. It could be a pinched nerve or something, or it might be nothing to do with AS. We tend to attribute everything we get to AS, but it's not always the case
I hope you can get someone to do some tests to find out exactly what's going on. Perhaps you could see a different doc for a 2nd opinion. That's what I had to do when my back got so back last year....my GP and rheumy kept saying it was just the AS getting worse but it turned out to be that horrible collapsing of the vertebra, which I needed surgery for
Not that I'm suggesting you need surgery, but sometimes you do need to speak to someone else about your problems so they can take a fresh look at it.

I'm not surprised you're feeling depressed. Constant pain and lack of sleep will do that to anyone, but to be told there's nothing to be done to help will make it seem 100 times worse!
Some of these docs have no idea about tact and diplomacy. (I think it used to be called a "bedside manner"??!!)

Is it possible for you to get someone in to help with the household chores? How old are your kids? Is there anything they can do to help. especially if you explain about your pain? Can your husband help out at all?

Poor Cara. I feel so sad that I cant' do anything to help
Please try and take it easy on yourself. Are you able to take, or be prxd any pain meds?

I do hope you feel better soon.

(((((HUGS)))))

Sue

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We need to get another KA get away going, its been too long, since we have all got together.

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Yes, I think that would be perfect....just give me enough time to figure out the finances...

Dear Cara,
I just wanted to add my good wishes for your coming out of this situation with your lumbar. I really hope it stops soon.
I agree with the advice about finding help with housework, that can cheer you up right there!! I know what you mean, I have piles of laundry and floors that need to be mopped, and so forth. It hurts to do these things and we just can't get them done.
About your husband, he needs to be more compassionate and understanding, that's what love is. You are not just a piece of machinery in his life plans, you are his life, part of him and more important than anything else. He should do everything he can to lift you up and support you. And if he's not, do NOT feel guilty, you are a good wife, look how much you love your children and husband.
This is not your fault.
I also agree with the Neurontin / Celebrex combination. The newest form is Lyrica. At first it made me groggy but now am used to it and it DOES help some of the weird fibromyalgia & nervie types of pain. Is your M.D. not giving you something stronger as well like Tylenol w/Codeine or Vicodene or in this case why not Percoset (oxybodone) for a short while ?? What would that hurt so you could experience not being in pain for a little while ???
Lastly, I agree that if you don't like and trust that particular Rheumatologist, find another. Ask around and find one that other women like. You deserve not to be scarred by your doctor. You have enough emotional pains with this disease.
I just wanted to add my wishes for you getting through this period and feel better in your day to day life !!
Sincerely, Rio

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And it's also a great way to get one of those really nice ergometric chairs for the computer station.

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Woohoo!!! I just got one of the best chairs I've ever seen at work. Everything adjusts on it. The seat slides forward and backward, the back adjusts so you can have it stiff or so it gives as much as you want. You can adjust how much lumbar support you want, and you can slide it up and down to fit your back. the arms adjust up and down, in and out and also will turn at an angle. The front of the seat automatically adjusts to the way you're sitting so there's not too much pressure under your thighs. I'm telling you, it is wonderful! Of course it wasn't cheap, $700.00, but I love it so much, I'm seriously thinking of some way I can afford to get me one at home.

Oh, Cara, I so wish there was something I could do for you. Take a deep breath and get it all out. Cry, type, whatever you have to do to release it. I feel every word you have just written and it hurts me to see another person in this position. I was once again reminded by the Rheumy this week that there isn't anything anyone can do to help me, and I am now totally out of options. I screamed, I just can't believe in this day and age of modern science and medicine that no one can help. I remain a prisoner to my pain meds so I can keep working.
If you are uncomfortable with your current Rheumy please go out and search for another. It is so important to have one you feel you can trust and talk to about anything.

Cindy

Hi Cindy,

Thanks for your reply. I am sorry that you rheumy told you there is nothing more that he can do for you. SThat is something no one wants to hear, but it seems like we will all hear it sooner or later. Hang in there!!

Hugs,
Cara

Hi Sue,

Thanks for your reply. I hope that you are doing better. How is your hubby? I hope he is doing better too.

I am doing a bit better. It is going to be very hot for next few days. The heat can definitely sap one's energy, so I am not looking forward to the heat.

I am currently on Mobic. I can't take pain meds that have codeine in them because I am allergic. My doctor has never suggested any other meds other then NSAIDS and flexeril. I guess I would need to ask for it, but then again I have a complex about being labelled a drug seeker. I once went to the ER for pain and was made to feel like all I wanted was dope. I now have a hard time asking for anything.

Thanks again for you reply. I hope you and yours are well.

Take care,
Cara