Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
The past week or so I've been getting horrible unprecedented pain, especially in my shoulders hips and low back. The back and front of my neck are also affected and the muscles under my jaw.
I've been taking extra magnesium ( just got remag so took some of that) and rubbing on mag cream and topricin but this is nearly unbearable and I'm not sure what to do.
What I'm worried about is that this is myositis or even rhabdo. I'm taking Losartan and Colestipol which have a vague association with rhabdomyolysis - Lyme can cause myositis.
This hurts so bad it's like some invisible wrestler is punching me in my upper arms and deep neck muscles alllll day. LIkewise at the base of my hips and lower back.
Is this just more Lyme madness?
Or should I go to the ER and get my CPK checked? I can barely move around the past few days and if going there is just going to earn me a bunch of eyerolls and a prescription for Tylenol there's no point.
Pain is making it hard to think straight. I would rather just lie here but if my muscles are actually being destroyed and metabolized that might be a bad decision.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hope you got through the night okay.
Could be side effects of either Rx or combination. Be sure to check side effects of all you take.
If this kind of pain is from lyme, it's important to know specifically why for you. Your LLMD is the one who should know.
Bottom line: the ER is usually not going to be the place to go for pain relief unless your life is in immediate danger.
To go there can be very hard in many ways - and it could put a black mark on your file that will follow you forever as a "seeker" of pain meds and they will likely not find any objective findings in the kinds of assessments they do on the fly.
Also be aware that most ERs in the U.S. will sharply discount those who might even whisper "lyme" even if not there for treatment (which they would never do) but as an important factor in the person presenting before them. From there on, it's just downhill most often.
You might also run the risk of very high bills that insurance won't cover. Do check your coverage soon, though, and be sure about who is in network, etc. and what's covered just in case you need it. Often doctors who may work at a hospital on your plan are not on your plan - and that can be very tricky.
I hope you can talk to your LLMD today about this so that you have a plan to make you more comfortable.
I'm really sorry you are going through all this. So many of us here have - and, yes, it can be a long rough & tumble road but something is calling for you to change something about what you are taking / doing, etc.
Your LLMD should know more about what that might be.
Take care. -
[ 03-01-2016, 02:34 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What you are experiencing may not be a herxheimer or even from lyme. However, so much about pain can be helped with good liver support.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
The regular medical people are telling me to go to urgent care or the ER so I can be referred to the proper specialist.
Sigh.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I don't know who these "regular medical people" are but, during the day, a week day, unless you present a life-threatening emergency - or something is broken or spurting -- the ER is not the place to be. Same for night and weekend, though.
Urgent care, perhaps but then regarding a person with lyme the "proper specialist" is not going to be one that will understand what's going on with your body.
Have you been able to contact your LLMD? They can refer you to someone they trust with the big picture. But you may not need to be referred as much as to alter, add or subtract something you are doing. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
quote:Originally posted by Jordana: I'm taking Losartan and Colestipol which have a vague association with rhabdomyolysis -
-Drugs like that are usually a big problem.
Wait... why are you on Losartan?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I asked to switch my bp meds because it's supposed to lower tgf beta 1. I need to be on some kind of blood pressure medication but all of them have side effects I don't like. All of them.
I've been looking it up this morning and I have a feeling that mixing welchol with losartan can cause the "rare" side effect of muscle inflammation.
I'm just going to quit taking losartan and see if I feel better in a couple days. Lots of mag. I was ready to go to the ER last night but today it's just mildly excruciating.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Jordana >>>>>,
Extra hugs, you've been in my thot's, praying this calms soon.
Your description sounds like a bad reaction to one of those meds,or a combo as has been stated.
Be really gentle with yourself for awhile, it can be scary as well as painful. And one thing I love about LymeNet ,is how understanding they are.
So many have been thru scary and painful side effects, herx's and so on. They really do get it.
Please keep us apprised of how you are doing.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say you plan "Lots of mag." - "lots" is a relative term. Ease up to your optimum dose. A red blood cell / intracellular test can tell you where you stand.
Be sure it's not all at once, must be divided 3 - 4 x day so as not to put strain on kidneys. Probably not go over 1,000 - 2,000 mg day total
If you plan to just stop a blood pressure Rx you've been on for a while, there may be a special way to do that in steps with medical guidance.
For a wider view of ways to handle blood pressure issues, search: "Stephen Sinatra, MD" "blood pressure"
and also: Mercola "Blood Pressure"
you might also cross search at "Townsend Letter"
but then also consult your LLMD for lyme can cause all kinds of issues with blood pressure.
some specific articles here relate to the heart / blood pressure, too:
posted
Jordana .. When I began the ReMag .. I began VERY slowly. It caused me pain for a few days while my body got adjusted to it. So maybe some of your pain is from that.
If you began at the full dose, your body will rebel.
I take Verapamil for heart issues. I know I like it way better than any beta blockers. I was just wondering why you were on something for blood pressure. Is it pretty high without?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Kratom is helpful for pain. There are alot of sellers & varieties. You just have to try some & see if it helps. The varieties can be dramatically different from vendor to vendor.
I prefer the white vein leaf for pain but other ones are useful, too. Don't take too much or it can make you feel a bit weird & give you a stomach ache. It wears off in a few hours if you take too much.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks Lymetoo -- I started the ReMag yesterday so I don't think it's from that.
I'm starting to think it is at least partially the Losartan because I've got less pain today ( especially now) and also I didn't lose any hair today or have tinnitis like I was having and thought was from Lyme.
UGH this drug mixing is so frustrating. I don't know what the heck is happening to me half the time.
In fact I think my BP actually went *up* on this stuff. I do need to be on something though. It's been creeping up for a couple years now.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks for the suggestion Sparkle7. I don't really have a lot of pain options since I have chronic gastritis and bile reflux too; so that wipes out a lot of easy OTC answers.
Pretty close to just going for a cannabis card over here.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Kratom is a leaf from a tree. It's not for everyone. It may not be good for you because some people find it hard on the digestive system. It has helped me alot but you have to find the right variety. It takes a bit of trial & error.
There are 3 main kinds - green vein, red vein & white vein. This refers to the leaf vein color. They each have different properties. It also depends on where it is grown.
Good luck! Have you tried infrared light? That's helps me. You can get an LED array or a device. There are several on the market.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic