posted
I am currently waiting to finish up all my labwork MRI and Brain Scan this week...then about to begin Treatment for Bart....Was being treated prior to becoming pregnant for Lyme and Babs. The Bart is causing severe burning/tigtening of my muscles along with stiffening and extreme pain in my joints along with cracking and popping. I sound like a bowl of rice crispies when I move. The pain I am experiencing is the worst yet in 5 years of illness and would have to be the most bothersome of all the symptoms Im presenty dealing with. For now I am taking magnesium, can't do epsom salt baths because I only have a shower, nootc meds work of course but I have flexeril which barely take the edge off aand the heating padalso only takes the edge of and beides I would need a heating pad suit to cover all the pain. ... my question is this (sorry, I know I am long winded) What if anything can anyone suggest I can do to help lessen this? Its terrible trying to get up in the middle of the night with my baby because I m so stiff and contracted I can barely bare weight or take stepps and it makes me lose my balance. Im afraid Ill fall from the pain while carrying the baby. any suggestions would be greatly apprecited.
Posts: 80 | From RI | Registered: Jun 2010
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scorpiogirl
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Boy you sound like me! For a while I was doing well on Invanz and then 2 weeks ago I started Rocephin and for whatever reason it bought back all my pain!! Now both feet are tingling with the right foot numb. That's an evil drug for me!
I'm waiting to talk to my LLMD tonight... so I don't have any suggestions for you. I just want you to know I totally understand your pain (literally).
I ordered some Mag oil to try... and even w/ my nightly epsom salt bath it's barely take the edge off. I'm beyond frustrated!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Im a scorpio girl too! It is so miserable. I taake the Mag supplement because the oil mae me so itchy that i felt like I took a roll in some fiberglass. I hope that you make out well and find some relief. If you come up with anything let me know! Good luck and feel better!
Posts: 80 | From RI | Registered: Jun 2010
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Leg pain (like you're describing) was what me made me find a llmd.
I've been treating Bart for 3 mo which has helped the joint pain and some feet burning issues.
The leg pain still persists in lower legs and left thigh.
This may be a long shot but doc told me to get support hose. I have no idea why they work but they definitely do.
With them my legs work (thought still very tender to the touch).
I get Jobst thigh-highs from Amazon for $13.
Maybe somebody else will chime in with other suggestions too.
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
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scorpiogirl
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quote:Originally posted by lucky8711: Im a scorpio girl too! It is so miserable. I taake the Mag supplement because the oil mae me so itchy that i felt like I took a roll in some fiberglass. I hope that you make out well and find some relief. If you come up with anything let me know! Good luck and feel better!
Hey that's cool! I'm not planning to lather the oil on my body but rather soak my feet in it. I hope that will relieve the pain help w/ numbness... something anything... grabbing for straws here. I will report my findings. I ordered some last week so the mag oil should be here soon. I'm going to order some Neuropathy Support Formula to try as well. I will let you know how I make out.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
I feel your pain, i also have tingling and burning in my hands. Joint popping also like rice crispies, waking up in the morning is much worse as they are stiff! Been treating bart for 2 months Of abx now with no improvement! Makes me think to just quit taking it.
-------------------- Posts: 215 | From California | Registered: Sep 2011
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scorpiogirl
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quote:Originally posted by Kramberry: I feel your pain, i also have tingling and burning in my hands. Joint popping also like rice crispies, waking up in the morning is much worse as they are stiff! Been treating bart for 2 months Of abx now with no improvement! Makes me think to just quit taking it.
Yep I am wanting to quit too! I'm sitting here waiting for my LLMD to call me so we can talk over what my next step is. I'm soo tired of all this! There has to be a better way!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Thank you all for your input. Good luck and don't quit...unfortunately I think it's a long road of trying things and coming at things from many different angles. I don't think that there are really any "recipes" for success but rather a trial and error system. What seems to work for one dosen't always work for another...or works but for some more quickly than fr others.
Posts: 80 | From RI | Registered: Jun 2010
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lymeinhell
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4 suggestions:
1. Take the flexeril, consistently, every evening. It's effects are cumulative. And take the brand name, not the generic
2. If you are sleeping on a regular mattress, get an air mattress and put it on top of your bed. No springs = no pressure points = less pain
3. Have you tried Zyflamend (made by New Chapter)? It's an herbal NSAID, without the scary side effects. You can take up to 8 a day. It's so effective vets are now recommending it for dogs as well. It got me off prescription Bextra, and is great for inflammation type of pain. It's sold by many stores,or online. http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=CN-2029
4. Apply the magnesium oil with little olive oil. Yes it is a little stingy, but that is short lived. Optimally, you should be getting magnesium by IV in order to get it into your cells where it's needed. Magnesium is a vaso dialator and being deficient is the cause of those consticted muscles. Taking it orally will not restore your cell levels to normal and does not correct itself .
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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I am sorry to hear about all the pain your are experiencing. When my children were little I was so sick. One thing that did help me was to chunk my days into 15 minute increments. I never thought about the whole day or even the next feeding/changing, etc.. I strictly focused on getting through the next 15 minutes. That method helped me, but it was also survival mode. Thousands of time I would also say to myself,"What choice do I have, I have to do this?" Then I would muster up the gusto and focus on the next 15 minutes. It's tough because it was so draining, but I made it through and things are a little easier. You may even consider having the baby sleep with you due to the circumstances. Down the road it will be a bad habit to break, but whatever gets you through is what counts. Good luck. climber
Posts: 108 | From Connecticut | Registered: Jun 2010
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Kudzuslipper
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Hi Lucky. Gosh I feel for you...it's hard enough without a new baby. I hope your tests reveal something and you can start finding relief. I am really new to lyme..only 5 months, But I have been dealing with what I thought was fibromyalgia for 18 years. I am no expert, so I hope others will weigh in if I am suggesting anything that is contradictory for Lyme and co... but I will share what has worked for me to take the edge off when it is really bad.
CVS sells a magnesium lotion. i find if I use it right after a shower it does take the edge off. Even better if I also take magnesium. the brand that works the best for me is Jarrow Magnesium optimizer (I also has potassium in it)
Topricin topical cream also helps-- I find it works best for joint pain as opposed to muscle pain
I found flexeril to make my muscle pain prescription Tramadol seems to work better for me
The best thing for my muscle pain was deep sleep...not sure if you can do this with a newborn...but If you can take Ambien (if you can wake up with it and not be dizzy) it has really helped me.
when my muscles are really really bad, I find heat actually makes it worse...it feels great while using it, but an hour later the muscles contract even more...I know heat is not recommended for fibro, even though I know it helps to kill the lyme.
and this last thing, I have absolutely no proof, and my muscles could be feeling better because of the ABX...but a while ago, I started using New Chapter Omega 7...It is sea buckthorn. It's tradition use is supposed to be for membrane health..if you think about the fascia that runs through your whole body is one big membrane... although my joint pain has been worse...my muscles are much more pliable. not sure if it is the ABX or this sea buckthorn...but maybe worth a try.
Posts: 1728 | From USA | Registered: May 2011
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posted
Just started rifampin myself, kind of shooting at bart while treating Lyme.
I am in agreement, had Lyme for 20 years this September and this might be the most relentless pain I've had the entire run. It has certainly been worse, however, there has been no relief in the past two weeks since I started rifampin.
Percocette 7.5, flexeril, plenty of supplements, nada. Last run of abx a half of a percocette would give relief and give me a bit of a woozy feeling. This time I take a half and 3-6 hours later take a whole and I can't even tell I've taken anything.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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The pain I am experiencing is the worst yet in 5 years of illness and would have to be the most bothersome of all the symptoms Im presenty dealing with. For now I am taking magnesium, can't do epsom salt baths because I only have a shower, nootc meds work of course but I have flexeril which barely take the edge off aand the heating padalso only takes the edge of and beides I would need a heating pad suit to cover all the pain. ![[Big Grin]](biggrin.gif)
... my question is this (sorry, I know I am long winded) What if anything can anyone suggest I can do to help lessen this? Its terrible trying to get up in the middle of the night with my baby because I m so stiff and contracted I can barely bare weight or take stepps and it makes me lose my balance. Im afraid Ill fall from the pain while carrying the baby. any suggestions would be greatly apprecited.
![[Smile]](smile.gif)
It is so miserable. I taake the Mag supplement because the oil mae me so itchy that i felt like I took a roll in some fiberglass. I hope that you make out well and find some relief. If you come up with anything let me know! Good luck and feel better!
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