The pain for four weeks since my relapse has been incredible. My head is going nuts dealing with this about 75% of the day/night.
I cannot sleep more than 2 hours at night. I get no rest at all. Either my joints are hot and inflamed or they are in pain and not too inflamed looking. It moves from joint to joint but it usually covers several at one time.
I've tried showers, ibuprofin, hot packs...nothing seems to work. I've been using some prescription pill killers but that upsets my stomach and obviously is not a long-term solution.
Last year I was on prednisone before I knew the diagnosis. It helped so much. Obviously, that's not the answer.
I've just started taking MSM.
Any ideas? Lily
Posted by schnuddelka (Member # 8031) on :
Lily, I was in a similar situation right after I got diagnosed. I had a period of a few months where I was almost having panic attacks from being so overwhelmed by not being able to sleep, pain, nausea, etc.
First, I'd talk to your doctor and pick the problem apart piece by piece. a, cannot sleep...try ambien or lunesta or benadryl b, pain...needs to be addressed c, I know there are many who disagree, but when you get into this kind of a situation, I do feel valium or something like it helps bring down the anxiety level.
I'm not a doctor, but the way I attack my problems when they get overwhelming is to break it down and solve them one at a time.
Hang in there, do your relaxation and deep breathing, hug those around you and focus on something other than yourself every day. Even if it's only for a few minutes, don't focus on yourself all of the time! It helps, believe me!
I hope this helps, PM me if you need to chat!
Posted by painted turtle (Member # 7801) on :
Lily,
I spent a long time in great pain through the night and honestly the only thing that helped during the worst of it (except when nothing helped), was xanax.
The xanax helped me rest a little.
Otherwise ben gay strips applied to the worst areas was helpful. I would put them on my spine, hip, neck, knee and even on my face. They were especially helpful when the hips were being impossible.
Heating pad on my spine or abdomen has also helped some.
With the impossible headaches, only ice would do, but still, seems I just suffer through those.
A hot bath was sometimes a little helpful.
Posted by Aniek (Member # 5374) on :
Lily,
Pain medications actually do work for long term treatment of pain. As long as you aren't taking too high a dose. If they make you nauseous, it helps to take with food and you usually do get used to it. The real long-term solution is treating Lyme.
I just started taking a supplement called Advanced Inflammation Control by Complementary Prescriptions. It seems to be helping reduce inflammation, but I need to be on it longer to know for sure.
I also taking Zanaflex to help reduce my muscle pain and Oxycodone when necessary for the break through pain.
Posted by Cass A (Member # 11134) on :
Dear Lilly,
Due to the addictive properties of Xanax and the serious side effects of other psychiatric drugs, I would personally not recommend them.
On the more natural side, Calicum/Magnesium drink can help with pain and sleep. I prefer the liquid to tablets.
Calcium citrate, Peter Gillham's CALM, works well for me. Also, A to B Calm is a calcium/magnesium supplement. I found both at my health food store.
B 1 helps a LOT with sleep!! Also B Complex.
Going for a walk, looking at things, until you are tired and then walking back also helps with sleep.
Best,
Cass A
Posted by ByronSBell 2007 (Member # 11496) on :
small doses of benadryl will help calm the immune system (that is were the symptoms are coming from)
Ativan helps calm the body and senses and will help with sleep some.
Get plenty of fluids and antioxidants.
Posted by painted turtle (Member # 7801) on :
PS>>>>
Just want to point out that there are varying degrees of this disease.
When I was in SEVERE LONG TERM PAIN......pain that I felt all through sleep....and in SEVERE LONG TERM ENCEPHLOPATHY on top of it.....
Xanax was the lesser of two evils.
Sometimes the situation dictates certain measures a person would not normally consider, but if it saves a life or the lives of those around you....
And I've never been a pharmaceutical person AT ALL.
Just want to make that clear. If a person is in a drastic situation, judgements about a medicine should be set aside.
Though, xanax is indeed, a short term answer, only when it is impossible or dangerous.
Otherwise for the more benign and now that I have come a long way from that kind of severity, I can at least sleep again (knock on wood) and am free from using xanax (unless a night of extreme organ discomfort, which happens occasionally, esp. bladder).... but
I've been doing the magnesium powder and it has been nice.
I just think all things in their due course and sometimes lyme disease is a dangerous and very extreme disease.
Posted by MaryOH (Member # 5609) on :
I take 2 benedryl at night to help with sleep. I took Ambien at one point but it made me have blackouts before I went to sleep. I would eat or do chores and not remember a thing. And, I find that tramadol(ultram) works pretty well for pain. I do take a lot of Vitamin D, magnesium, potassium, and fish oil. It seems like when I forget to take them, I have a flare up. Your herx will lesson as treatment goes on, so don't despair. That means it's working!
Posted by Lily (Member # 13158) on :
Thanks!
You've given me some ideas to look into. I've thought about the pain free diet (eliminate nightshades) but I am loosing weight right now and that could send me further into a pit. Still, it looks appealing.
I guess I will try some of the supplements. The lack of sleep is because of the pain. So, I am going to try to hit the pain and get rid of the problem.
Blessings,
Lily
Posted by hopingandpraying (Member # 9256) on :
Aniek - How are you doing on the Advanced Inflammation Control by Complementary Prescriptions? Is this a supplement or do you need a prescription for it?
Where did you purchase it? Cost? Dosage? Is it helping with pain?
My son tried a product called Curamin for inflammation and pain, but it did nothing.
Posted by luvs2ride (Member # 8090) on :
Lily,
Think about that diet again. You are on the right track.
My lyme was in every joint and became Rheum. Arthritis. Explosive RA to quote my doctor.
Change of diet stopped 50% of the inflammation hence 50% of the pain. At the time, I could barely move. I could not rise from a chair, lower myself into a tub, open a door or a bottle, drive a car, zip my pants, brush or wash my hair. I was in serious shape.
So 50% improvement meant getting my life back.
I then found a medical doctor trained in leaky gut (if diet improves your pain, you have leaky gut), heavy metals, etc.
My healing path has been and continues to progress. After 2 years of treatment, my gut is healed and now the doctor is focused on cleaning up my body. I am now with a rheumatologist who is also an LLMD. She too believes in healing the gut, heavy metal toxicity as well as microbes. Bloodtest reveal I have lyme, babs WA-1, mycoplasmas, C. Pneumoniae, tapeworm, H. Pylori(cleared)and a urine challenge test revealed serious levels of lead and mercury. It is a slow process to remove these toxins. Genetically, I am very deficient in my ability to clear toxins. So, treatment must go slow to keep me out of pain.
A study from Yale on AIDS found the virus residing in the gut and in studying it, they learned 70% of the immune system is in the gut.
You may well need a shortterm aid to help you with pain and I recommend it, but you will need a longterm solution to prevent the pain from returning.
Also, while pain killers may be necessary for a short time, pain killers damage your gut. Please take steps to heal your gut.
Luvs
Posted by Aniek (Member # 5374) on :
quote:Originally posted by hopingandpraying: Aniek - How are you doing on the Advanced Inflammation Control by Complementary Prescriptions? Is this a supplement or do you need a prescription for it?
Where did you purchase it? Cost? Dosage? Is it helping with pain?
My son tried a product called Curamin for inflammation and pain, but it did nothing.
I've only been on it a few weeks. I'm not comfortable saying it really works yet. I need to get through a full month on it to see how I handle my hormone changes.
It is a supplement. I purchased it from my LLMD and I haven't found it online, but I haven't spent a long time looking. I thought I found it, but it was same name and a different manufacturer. It might be the same thing.
It's about $40 for a bottle I think. I take 2 in the morning and just started taking 2 in the evening. It seems to be reducing inflammation and associated pain, but as I said, I want to give it more time.
Posted by Lily (Member # 13158) on :
Luvs,
Thanks for the information. Where can I go to read more about having a leaky gut? I've read this term on this board but never heard of it before.
I had absolutely no pain prior to last June. Then, the pain set in after I got Lyme and co-infections. The pain and other symptoms went completely away and I was off abx in January.
The pain, rash, fevers...all came back 1 month ago...lie a bomb.
I figured this was cause by the Lyme. Can you explain the connection to me between this and leaky gut. Wouldn't I have continued to have pain after January if this was a continual problem.
As you can see, I'm confused.
Thanks!
Lily
Posted by hopingandpraying (Member # 9256) on :
Thanks Aniek - I hope the supplement helps. Please keep us posted on your progress.
Posted by BOEJR (Member # 1734) on :
Hi Lily,
I used to get very severe pain in the knees and hip. I did this while opening my pool one spring and found it to be miraculous but not for the faint of heart...
I usually open my pool early in the spring because it is really the only form of excersize that I enjoy. I jumped into my pool and I did not realize how cold the water was. It was 58 degrees.
I only stayed in for a few minutes now that I had to fish something out of the bottom of the pool. After coming out and warming myself I realized that the pain was gone. It was a temporary relief but I will say that I treasure the relief greatly.
Try and fill your tub with warm water and add in cold water slowly until you can not tolerate it comfortably. I would suggest you wrap a towel over your shoulders until your body adjusts.
Don't try it if you think it will aggrevate your symptoms though. Or perhaps start with cold compresses instead... Just a thought.
Hope this helps,
Julia
Posted by jamescase20 (Member # 14124) on :
plaqelennel is for pain actually, ambien loosens my shoulder knots from babs I think, benedryl added helps more, muscle relaxers dont work, alchol covers the pain, but makes me puke and sick as ever. Darvocet helps the pain in my back. Naproxn helps BIG time, but takes the max dose Rx 550 mg every 12 hours, and takes about 3-5 days for it to kick in. 5-htp helps for sleep, enteric coated for stom pain.SSRIs helped me too for pain and fatigue. Darvocet also wakes me up. Sudafed does...along with adrenal treatz