I need help

[Gknee]

It has been a terrible few days. Small little storm systems coming in and out. I have so much joint pain and osteo arthritis knee pain. (I've had 32 years of OA already and putting off a TKR as long as possible.) Even my less seriously damaged OA joints are raging too. I haven't been able to sleep much in the past four days. It really starting to get to me. I am living with my heating pad and warm baths. I'm taking vicodin and it is not touching the pain. If I take more that one pill a day I can't sleep at night. I have been trying to tough it out and only take one a day. That leaves me in pain and not able to sleep anyway. I feel like saying screw it and taking more than one a day. I figure I'm not sleeping anyway. I felt like crying last night I was so miserable.

ARGH! Without the sleep my Fibromyalgia and Chronic Fatigue are really raising their terrible little heads. I am starting a major flare. Overwhelming fatigue, horrible unrelenting muscle pain, and agonizing joint pain... Basically, I am a mess.

I have two questions:

1) I am not sure what pain is OA and what is joint pain from my CFS/FM. I know my knees and hips are OA because I have had pain there before my CFS/FM developed. Now many more joints seemed to have pain. How do we tell the difference between CFS/FM joint pain and Arthritis?

2) Any suggestions on helping me cope with the pain of winter this year?

 

[_Kim_]

GKnee,

I wish I had some good answers for you in the short run. Being in that kind of pain drives someone mad. I can only share with you some thoughts that come to mind.

Capsaicin Cream? Cool compresses to bring down the inflammation? Lymphagen cream to bring down the swelling (heard about this stuff from Jody)?

In the meantime, can you call your doctor and maybe there is a different pain killer you could try? A pain patch? Something...

In the long run - I can only repeat what my clients have told me over and over again - that they wished they hadn't waited so long to get the knee or hip replacement. Every one of them got immediate relief from the intractable pain - though rehab was/is never easy - it never got as bad as when the OA was crippling them.

Now, if you do decide to wait (no judgement here) - there are some things that might make a difference -

Hyaluranic Acid injections &/or supplementing with Collagen and H.A.

Note: I've been using Collagen (10g/day) for over 6 months now for OA in my hands. It has been very effective.

 

[Jody]

Traumeel ointment is good for serious pain. I found it in my naturopath's office but also in a big grocery store that has some more natural treatments. It's homeopathic, and is used apparently by athletes, etc. Effective on pain that nothing else would touch.

Detox needed perhaps? Just trying all the possibilities I can think of here. Things like Epsom salt baths can be helpful in that regard. No silver bullet but a help. Just make sure to rinse yourself off after or the toxins remain on the skin.

Chiropractic? I had terrible tendinitis that my doctor couldn't help that was healed within a few weeks by chiropractic.

These are more long-term, don't show immediate results -- omega 3 oil has helped heal some very serious muscle and joint pain that I used to get. I still get some but it is not nearly what it was.

Calcium, magnesium ... these may be a stretch, and then again maybe not.

All I can think of right now. I hope you get some relief.

 

[Lily]

gknee

So sorry you are having these problems. Not sleeping really compounds everything so much!

I can tell you I am having the same problem, and usually do every winter. My knees really get going when the cooler weather hits - I say cooler because I live in Arizona and by most people's standards this certainly wouldn't be considered cold, but my joints (knees especially) sure think so.

I have FM and severe OA, especially the knees, and have also been putting off TKR, but because of CFS. I can only give you my experience and see if maybe it may be of help to you. From the sounds of things, you may have already tried these things, but here goes:

For one thing, my rheumatologist says (actually his PA) that when one type of pain intensifies, then all of our pain intensifies.

One thing they use to do when I'd have a bad flare (this is when I was still working - I haven't done it for a while now) is give me an IM injection of Toredal, which is just a high powered anti-inflammatory. They would then want me to stay in bed for about 3 days, use muscle relaxants and Darvocet (I could never tolerate Vicodan without throwing up).

It DID help - it seemed to keep me from going into the full blown whole body horrible experience that could last for weeks/months, and get into not sleeping at all. My sleep was already very disturbed.

I was wondering if you take anything other than Vicodan for pain - like Ibuprofen WITH the Vicodan - and what about a muscle relaxant such as Flexeril? Vicodan is not an anti-inflammatory and so does nothing to help with that. Where Ibuprofen or another anti-inflammatory taken on a regular basis (2 or 3 times a day and in prescription strength) can really help with inflammation of knees and hips. Adding the muscle relaxant along with sleep med can be a good combination.

Of course all that along with your heating pad, and epsom salt soaks if you can do it. I find that the soaks really help before bed, but when I'm really bad it's difficult to get in and out of the tub because of my knees.

I hope it doesn't sound like I'm a druggie if you're not taking this combination of medication. But it is the usual combo for FM, along with a low dose anti-depressant that also helps with pain. (Which I don't take anymore)

One caution is that you cannot take the anti-inflammatory meds for long periods of time and it's good if you are taking something to protect your stomach/esophagus like Prevacid or another proton pump inhibitor.

I often had terrible bouts of costochondritis and found that I was taking Ibuprofen constantly to try to control the inflammation (in prescription amounts of 600-800mg 2-3 times a day). This should be done with care and supervision (labs to check kidney function) because it can be toxic to the kidneys.

I also use Baclofen as a muscle relaxant rather than Flexeril or some of the other popular ones. It's and old old drug, pretty harmless and cheap, but it is as good a muscle relaxant as the expensive ones to do the trick for me. Flexeril makes me loopy.

Doing whatever you can so that you can sleep half way decently at least puts you in a better position to deal with the pain each day, one day at a time. Certainly, for me at least, it never gets much better than that.

I have been taking high doses of Omega 3 - about 6 grams a day - for it's anti-inflammatory qualities for a while now. It was recommended and seemed like an awful lot, but then I noticed in Dr. Klimas's talk, that's the amount she recommended as well. It does help with my extremely dry skin too. And I have given up the Ibuprofen because it did become nephrotoxic, and it was a good thing we caught it when we did. So be careful.

 

[Jody]

A benign little bottle of drops made from flowers can sometimes help reduce bad pain. Rescue Remedy, not expensive, nothing harmful in it. Also good for panic attacks.

I was prone to bad ones a few yrs ago, and they would bring on terrible pain in my right lower arm, like being bitten by an animal with sharp teeth, and it would pulsate. I had a punky arm at the time to begin with and this is where I would get hit.

First hit of Resuce Remedy took away the worst of the pain though I did feel tenderized long after ... second hit helped reduce the physiologically - induced panic attack.

 

[Jody]

Forgot to mention -- Rescue Remedy helped my husband start to be able to sleep at night again after years of insomnia that were just getting worse and he'd found nothing that helped.

Except for Rescue Remedy.

 

[gracenote]

winters make everything worse

ARGH! Without the sleep my Fibromyalgia and Chronic Fatigue are really raising their terrible little heads. I am starting a major flare. Overwhelming fatigue, horrible unrelenting muscle pain, and agonizing joint pain... Basically, I am a mess.

I'm so sorry you're having such a hard time Gknee. Winters make everything worse for me, too, though I don't have your level of pain.

I'm wondering if anyone has any suggestions to help you sleep. Sleep is so important.

I use Ambien, but I know that doesn't work for everyone. I've had to increase my dose over the years, but my quality of sleep is so much better when I'm on it. I have to pay out of pocket for the extra, but the generic is not so expensive.

Chronic pain is so difficult as it never seems to give you a break. It's like before you can catch your breath, another wave is overwhelming you. Life begins to feel like unrelenting pain with no end in sight. I've found that sometimes it helps me to notice when there is just a little less pain, or somewhere in my body that doesn't hurt as much. I never truly hurt all over all the time even though it may feel like it. Just a moment of feeling a little less tormented can sometimes help me settle down a little.

You said, "Basically, I am a mess." Me, too. But I'm not always, all the time, a mess, and my guess is that neither are you. Here's to the part of you that is holding out hope and that has tremendous strength and resilience.

Those are just some thoughts while you try to find solutions that work for you. I wish you good help.

Gracenote

 

[kurt]

mold

Here is something to consider. With many storm systems coming and going (that is happening where I am right now as well), the humidity levels are probably up and that can activate mold levels. I have noticed increase in all symptoms, including joint pain, when mold levels go up. Maybe try a HEPA air filter in the room you sleep in, when I lived on the East coast I used a dehumidifier to keep the mold down and that really helped.

 

[neuf08]

Rescue Remedy might be able to help. I don't know how well it works for actual situations of intense pain. It might help you sleep at night though. It's great for taking the edge off of your nerves during times of stress or anxiety, so it might help to take it. Because it helps you relax, it can also help you get some sleep. 5-HTP is another thing you could look into that is being thought to help fibromyalgia now. This will definitely help you sleep well at night and get the correct sleep cycles, which is thought to really helps the muscles and such, since this is the time of day when they can repair and regenerate themselves. I've heard accounts from people who say that it does seem to really help their pain a lot. Just make sure not to take it with any other drugs that affect serotonin levels. There are a few other drugs interactions as well, so just make sure you're not currently taking anything that the 5-HTP will interfere with.

 

[Sunday]

There are many excellent suggestions here. This is clearly the go-to place for talking with people about pain and sleep! But since nothing works for everyone, I'll add my contribution:

heat lamps - a relative showed me that using a heat lamp at a distance of about 18 inches, for 15-20 minutes, really helps nerve pain. At least it really helps my nerve pain, as well as muscular aches. I use a heat lamp bulb and chicken brooder holder I bought at the hardware store for about 30 bucks.

far infrared wraps and quilts - working I guess on the same principle as the heat lamp? There may be other brands, but the only ones I know of come from Nikken. They aren't cheap, but they are good quality and last for years. They really really help my nerve and muscle pain. They also alkalinize your body, which may be part of the anti-inflammatory action.

marijuana oil - OK, speaking of druggies...but it's legal in my state with a prescription, and I'm glad. It's a valuable sleep remedy (that won't shred my liver from constant use), it helps take the edge off the nerve pain, it totally does away with nausea, and it helps my mood a lot! I only take it at the end of the day, unless I'm so crashy being stoned doesn't make a difference (except to keep me from despair).