[Jennijojo]

I am in the process of getting pm approved and have been having increased pain. Seems like the changing temps are really affecting it. I don't know but it's going further up my arm and sucks. Especially when I lay on it, I wake up wanting to scream (or when I drive or pretty much use it and it's my dominant arm)

I am not on meds and was thinking I should wait till I see the pm doctor. I have avms in my gi tract and cannot take NSAIDs without bleeding. I am taking the max amount of tylenol a day and am on an ace inhibitor already for blood pressure. So what can I do to get through this time and maybe decrease some of the pain at home?
Any tips or tricks? It's been feeling like I have a terrible burn on my whole arm. But the swelling is sticking to my thumb only, I'm grateful for that.

It's been a real struggle and I've been trying to keep busy to get through it. Just hard when hands are kinda a big part of being busy. Ugh I hate this!

[Littlepaw]

Jenni,

Aaack! Wow! There is a known correlation between CRPs and ACE inhibitors. Maybe changing this med could make a difference for you.
ACE inhibitors increase bradykinin and other neuro peptides that contribute to neurogeniic inflammation. There are a couple of studies out there on this. The link was solid to cases of CRPS and not seen in other types of antihypertensives. Can you safely switch to something else??? Alpha blockers have the affect of downregulating adrenaline receptors which are implicated in neuropathic pain and also provide some partial sympathetic blockade orally. But really ANYTHING other than an ACE inhibitor would give you a better chance.

Ideas and tips - getting in the water is good for most everybody, omega 3s, Vit C, epsom salt soak or lotion, lidocaine cream and my latest trick....cough syrup. Yep cough syrup. Dextromethorphan is an NMDA antagonist like ketamine only not as strong and usually needs a high does or quinine to help absorption. But I figured what the heck, it's a cheap reasonably safe thing to try. For those of us who are sensitive to meds it just may help. I take the max adult dose before bed in a formula without any other OTC meds. Don't know if it's placebo but I have felt more comfortable lately.


Littlepaw

[Jennijojo]

Originally Posted by Littlepaw

Jenni,

Aaack! Wow! This is huge, there is a known correlation between CRPs and ACE inhibitors!
ACE increases bradykinin and other neuro peptides that contribute to neurogeniic inflammation. There are a couple of studies out there on this. The link was solid to CRPS and not seen in other types of antihypertensives. Can you safely switch to something else??? Alpha blockers have a reverse affect and down regulate adrenaline receptors which are implicated in neuropathic pain and also provide some partial sympathetic blockade orally. But really ANYTHING other than an ACE inhibitor would give you a better chance.

Littlepaw

Ahhh no! Well good thing is they aren't working. I'm also on beta blockers. I have this terrible Bp that won't go down. I'm sure being in this much pain doesn't help (last week at the drs Bp check I was 193/130) and nothing the drs have tried will get it to normal. I'm on metoprolol and losartan, the losartan makes me feel so horrible. My kidneys hurt and I feel like a zombie on both. I'm going to have to talk to my dr...She started me on them a couple months ago. I had the pain before I went on them, but like I said it's been going further up my arm. I was on lisinopril but it made me cough. I'm on a major diet and have been losing about 5lbs a week and hoping maybe I can get off them in a couple months all together, however uncontrollable Bp runs in my family. But I had septal akinesis when all this Bp stuff started still don't know why. I read things and often wonder if I have a connective tissue disorder with the heart stuff and the joint issues. Who knows.
Kinda would be nice to have someone find out why my Bp is so high vs just pushing all these nasty meds on me.

I still haven't told my gp about my crps diagnosis. I just Had the hand specialist send her the info.
Now I must go read cause I did not know that! I figured since they say they are used for diabetic neuropathic pain that it wasn't the meds (I am not diabetic). Thank you LITTLEPAW so much for the info!

[Littlepaw]

just added some tips to my post, we were writing at the same time

[Jennijojo]

Originally Posted by Littlepaw

just added some tips to my post, we were writing at the same time

I'm going to try the dextro. I love to swim but i don't get to much until the pool I belong to opens in a month or so (its outdoor) I do soak in the tub
I just get really worried about not using my hand.

On the ace inhibitor note I just called and left a message at my Gps office telling her of the osteoporosis and crps diagnosis and asked I the losartan could be making it worse. I hope and pray if she doesn't know she doesn't just say no. I hope she looks I to it. I really don't want to stroke out and I really hate this pain! Grrrrr I hate this so much!

I was reading what I could find about the link between the two and can't find if when the meds are stopped if stays the same? Even if it just didn't soread any further. Cause for the last year it was only my wrist and thumb and since starting the ace it's been my toes and all the way to my shoulder. And the intensity of the burning feeling has increased so much! I would have never thought to think the two LITTLEPAW if you hadn't have told me! Thank you thank you!

[Littlepaw]

I can only imagine that stopping a med that contributes to the chemistry of CRPS would be helpful. Getting the inflammatory soup to weaken could conceivably bring down symptoms some. It is a known thing so definitely worth trying.

Make it easy for your doctor. Email a link to the study to her office manager or print it out and fax it if she says no right off. That way they have it and not just your word. I can't imagine she would say no after that. Seems like it would be a liability to keep a patient on a med they are asking to switch because of a link to another condition. if you continued to worsen that could backfire on your doctor. I think it is even mentioned in current Medscape general info on CRPS so no longer impossible for a doctor to find....

I am glad I read your post and could be of help! good luck!

[Jennijojo]

Originally Posted by Littlepaw

I can only imagine that stopping a med that contributes to the chemistry of CRPS would be helpful. Getting the inflammatory soup to weaken could conceivably bring down symptoms some. It is a known thing so definitely worth trying.

Make it easy for your doctor. Email a link to the study to her office manager or print it out and fax it if she says no right off. That way they have it and not just your word. I can't imagine she would say no after that. Seems like it would be a liability to keep a patient on a med they are asking to switch because of a link to another condition. if you continued to worsen that could backfire on your doctor. I think it is even mentioned in current Medscape general info on CRPS so no longer impossible for a doctor to find....

I am glad I read your post and could be of help! good luck!

I'm going to have to bring it in when I get to see her in a month. I called her and was told that it absolutely would not make a difference with the crps. She loves these Bp meds I guess cause she's always reluctant to switch them and I've had a lot of side effects through this. Kinda frustrating

[Littlepaw]

Hi Jenni,

I am sorry to hear you didn't get a better response. It Is difficult to understand in light of the fact that you have worsened and your BP can hardly be called controlled at the rates you gave. If the meds were working great that might be one thing but even then.

I would encourage you to look at the info and decide how important it is to you to pursue this and how quickly. We are our own best advocates and many busy doctors and overwhelmed nursing staff will never have the time to look at research to know what you are talking about. I am enclosing a link to a Medscape page where the very first line says CRPS is associated with ACE inhibitors. Can't make it any easier than that.

http://www.medscape.com/viewarticle/750778_3

Some ideas

- Fax the article or email to your doctor's nurse asking that it be given to her and possibly placed in your chart.
- schedule your appointment for sooner (I am sure your doctor will want to see you to change anything)
-take the info with you to PM and get their input
- ask for a referral to a cardiologist since your BP is resistant to treatment and hasn't been worked up. If you've gone round and round on meds, this may be a good option.

Good luck and keep fightin'. No one is more invested in the patient's recovery than the patient themself...

Sending Healing Love, Littlepaw

[Jennijojo]

Originally Posted by Littlepaw

Hi Jenni,

I am sorry to hear you didn't get a better response. It Is difficult to understand in light of the fact that you have worsened and your BP can hardly be called controlled at the rates you gave. If the meds were working great that might be one thing but even then.

I would encourage you to look at the info and decide how important it is to you to pursue this and how quickly. We are our own best advocates and many busy doctors and overwhelmed nursing staff will never have the time to look at research to know what you are talking about. I am enclosing a link to a Medscape page where the very first line says CRPS is associated with ACE inhibitors. Can't make it any easier than that.

http://www.medscape.com/viewarticle/750778_3

Some ideas

- Fax the article or email to your doctor's nurse asking that it be given to her and possibly placed in your chart.
- schedule your appointment for sooner (I am sure your doctor will want to see you to change anything)
-take the info with you to PM and get their input
- ask for a referral to a cardiologist since your BP is resistant to treatment and hasn't been worked up. If you've gone round and round on meds, this may be a good option.

Good luck and keep fightin'. No one is more invested in the patient's recovery than the patient themself...

Sending Healing Love, Littlepaw

That's the problem I have with her as my gp, I can never get into her. She told me to ask the desk to get me in sooner and they said they couldn't. So I'm going to print that out and will run it by her office with a note that asks her what she thinks. She is one that calls me herself from home but it's always something about my Bp or rhythm. I understand she is so worried I'm going to stroke but I would love if she was as interested in other stuff. I also am a huge wimp hence why I was scared to even tell her I had that awful crps diagnosis given to me. I seem to care too much what others think of me. I need to change that cause I tend to not advocate for myself very well. Lol if I had once ounce of the moxy my husband has I would get so much more done for myself.

[Jennijojo]

I also got in with pm before my next drs appointment so I will bring it then as well.