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I am in so much pain, what should I do?


TravelingChris
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Okay, here are some facts- I cannot take aspirin,ibuprofen or any NSAIDS because I am on coumadin and also they cause esophageal spasms which hurt like heart attacks. I am having the perfect storm of hurt- my rheumatoid arthritis is flaring, it is causing my neck spasms to be worse than normal, which is causing nerve pain shooting down my arms. My knees are hurting too- both have less than 25% of cartilage left and that was as of a year ago, and more- my dry skin in itchy and painful in parts, my lower back was hurting because of pre-menstrual stuff (though I really don't have periods anymore since I have had an edometrial ablation but I still get pains) and then, on top of that, my lower back went into a bad spasm too since I did some housework yesterday.

 

I am already taking tramadol every four hours along with Skelaxin (the muscle relaxant) and I have taken some prednisone in the last few days (leftovers). I don;t have an appointment with a doctor until MOnday and can't get into a pain specialist until the end of January. In the two hours or so that the medicines work, I am not too bad off. BUt they take a while to start working and they quit before the four hours. I am not a crying type of person but this is so painful it is making me cry.

 

What should I do?

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Omega-3s can really help with inflammation and dry skin. Can you take fish oils or salmon oil or cod liver oils? Tumeric as well. You can heat up some milk, dump in a bunch of tumeric (2 tbs/cup of milk) (if dried, get a fresh jar), stir and drink. I have problems with inflammation and these things make a difference quickly.

 

:grouphug:

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I will look for my Epsom Salts. I do have some somewhere. Heat does help but I believe my middle daughter took my heating pad and I don't want to drive anywhere since moving my neck hurts. I will go have a warm bath and watch some tv. (OUr big jetted bathtub is in a huge room in the basement and it also serves as an exercise room, and storm shelter and these last two things are why we have a tv in there.)

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I will look for my Epsom Salts. I do have some somewhere. Heat does help but I believe my middle daughter took my heating pad and I don't want to drive anywhere since moving my neck hurts. I will go have a warm bath and watch some tv. (OUr big jetted bathtub is in a huge room in the basement and it also serves as an exercise room, and storm shelter and these last two things are why we have a tv in there.)

 

I was going to say a jetted tub if you have one. I was in a lot of pain last week and I took a nice, hot bath every day for about 4 days straight in the jacuzzi. It helped so much! Hope you feel better!

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Been there. Recently.

 

Get thee to a massage therapist. Most massage therapy places have 2 prices--one for the occasional visit and one for regular clients. What you want is deep tissue, trigger point release, or myofascial release. It will hurt like the dickens. It will also help enormously. Spasming muscles make the joints themselves hurt worse.

 

Heat helps. I have a heating pad and a heated blanket.

 

Taurine relieves pharmacologically-induced muscle cramps and anecdotally improves natural ones, too.

 

Once you have the pain to manageable levels, you're going to HAVE to figure out what exercise you can do to prevent it from getting so bad again. Moderate exercise is the single best thing for RA (and a ton of other things, too), and raising your level of fitness can help prevent the overuse spasm.

 

For your skin, use something with a ton of Vaseline. Nothing else moisturizes as well, as unsexy as it is. I usually recommend a CeraVe product with petrolatum.

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I'd manage my health so I could come off the coumadin so I'd be able to take NSAIDs.

 

That's a bit flippant to say without knowing why she is taking coumadin.

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Is it possible to get a few tabs of Oxycodone on Monday? Something that might help you manage for even a couple days might disrupt the pain spiral.

 

 

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Tramadol may be the problem. I am not an expert at all and do not have time to google but I think it is the pain reliever my best friend was just taken off of due to similar complaints. She started it for severe uterine cramping about 3 weeks ago. Very detailed story so not going into it, but ended up with deep bone and muscle pain all over. Pain shooting down legs. It took 3 days to completely leave her system now all she needs is an occasional paracetamal. I would research a bit. After she quit drs etc confirmed that that was a potential effect.

 

I am apologising now if I have my drug names messed up.

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I used to be on Lortab 5/500 which worked well and I was supposed to take it three times a day whether I felt pain or not since if I waited for the pain, the medication wouldn't stop it. Then when I moved here, the jerk of a rheumatogist here didn't want me on it, even though I have been on it for seven or eight years with no increase in dose so obviously I am not a drug addict. Then he keeps saying dumb things like I have osteoarthritis when I have all the symptoms of RA plus the xrays that my joints are being damaged in a symmetrical way and none of my previous 8 or so rheumatologists never thought I had OA. And of course, not only do things like steroids help (not true in OA) but I am on a heavy duty medication which would be malpractice if I did just have OA. Except sometimes he marks me down as having RA. Plus every once in a while, he decides all my pain is fibromyalgia- except that while maybe I do have that, it isn't the end of the story. My joint pain has real arthritic damage behind it- not just my imagination. Plenty of xrays have shown it.

 

I would be trying to get a new rheumatologist but unfortunately, I have two even sicker children I have to take care of. One is having seizures and other issues and has still not been diagnosed nor treated and the other is suffering from depression and we keep trying medications. We think we found one now but the dose was too low so we have to slowly uptick it. I am just running around to doctors, dentists, vets, eye doctors, etc, etc, etc.

 

I did take the bath and it was pain free while I was there but I am back in pain again. I will go watch some very engaging tv= but it sure doesn't help that I have these sick kids to worry about. IF we can't get my youngest on correct dose of medication soon, she will have to redo the grade and that is such a black mark for college. Then the other one is supposed to go back to campus next week but still no treatment, no daignosis, and she has lots of seizures part of the month. She has been referred to the highest level Epillepsy center so hopefully that will happen soon. I hate for her to start and then drop out. But I know that she so wants to keep doing school and not be in a holding pattern.

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Do you have rice, lentils, or feed corn in the house or somewhere nearby? In place of a heating pad, you can sew any of them into a cotton sack, or simply pour some into a pillowcase and tie it shut. Put it into a microwave for a few minutes.

 

Do you have the option of the ER or an urgent care facility? Will your doctor prescribe something over the phone? I also knew someone who wasn't helped by tramadol and was switched to percocet, I think, which worked much better.

 

I'm sorry you're in so much pain. I hope you feel better soon. :grouphug:

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I used to be on Lortab 5/500 which worked well and I was supposed to take it three times a day whether I felt pain or not since if I waited for the pain, the medication wouldn't stop it. Then when I moved here, the jerk of a rheumatogist here didn't want me on it, even though I have been on it for seven or eight years with no increase in dose so obviously I am not a drug addict. Then he keeps saying dumb things like I have osteoarthritis when I have all the symptoms of RA plus the xrays that my joints are being damaged in a symmetrical way and none of my previous 8 or so rheumatologists never thought I had OA. And of course, not only do things like steroids help (not true in OA) but I am on a heavy duty medication which would be malpractice if I did just have OA. Except sometimes he marks me down as having RA. Plus every once in a while, he decides all my pain is fibromyalgia- except that while maybe I do have that, it isn't the end of the story. My joint pain has real arthritic damage behind it- not just my imagination. Plenty of xrays have shown it.

 

I would be trying to get a new rheumatologist but unfortunately, I have two even sicker children I have to take care of. One is having seizures and other issues and has still not been diagnosed nor treated and the other is suffering from depression and we keep trying medications. We think we found one now but the dose was too low so we have to slowly uptick it. I am just running around to doctors, dentists, vets, eye doctors, etc, etc, etc.

 

I did take the bath and it was pain free while I was there but I am back in pain again. I will go watch some very engaging tv= but it sure doesn't help that I have these sick kids to worry about. IF we can't get my youngest on correct dose of medication soon, she will have to redo the grade and that is such a black mark for college. Then the other one is supposed to go back to campus next week but still no treatment, no daignosis, and she has lots of seizures part of the month. She has been referred to the highest level Epillepsy center so hopefully that will happen soon. I hate for her to start and then drop out. But I know that she so wants to keep doing school and not be in a holding pattern.

 

 

You're not alone in your worries about your dc's health and college. :grouphug:

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I am going to heat the rice thing. It should help.

 

In terms of coumadin, as NMoira said, I can't get off of it. I have a history of blood clots= the last one I know about was from my ankle to the top of my thigh and that is where they stopped looking- I have no idea how much further it went. I have factor V Leiden and when you have had more than one blood clot, you are a lifer. I hadn't even realized that forming blood clots with IVs wasn't normal.

 

I am going to call the rheumatologist nurse tomorrow morning, first thing, and see if he has a cancellation. Normally they will give me a shot of steroids and then put me on a dose pack of Medrol. That would probably do the trick.

 

I am going to the pain clinic because they will do multiple things to help me including physical therapy which my stupid rheumatologist hasn't offered.

 

In terms of Voltaren gel, that stuff was fantastic but I was told I can't use it anymore when I went on the coumadin since they weren't sure if it gets absorbed into the blood stream.

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I wish I had some ideas for you, but I don't have a clue. I just wanted to post some hugs for you, and to let you know I'm thinking of you and hoping you will feel much better very soon. The worst thing about the kind of pain you're having is that you have no idea when it will end, and that is so depressing and discouraging. With a lot of things, you can keep your spirits up because you know the pain will end within a couple of hours, or after you take the Aleve, or whatever, so it's a lot easier to deal with it. When the pain just keeps coming, it's such a helpless, horrible feeling. :(

 

I'm so sorry you're feeling so awful. :grouphug:

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Just sending hugs for you, Chris. I'm sorry everything is so ridiculously miserable right now.

 

I don't know if this would help, but dh has an inflammatory condition, and he has been helped tremendously over time by taking 12 mg of axtazanthin daily. He started out taking krill oil, but then we switched him to the isolated compound, and we've been using some that is sourced from blue-green algae, b/c I like that it is sustainable and non-allergenic. he used to get up from a chair and hobble for the first 20 steps until he "unkinked." After three or four months of his taking it, I suddenly noticed one day that he wasn't walking like a geriatric person any longer. I asked him about his pain level, and he said he didn't have that same pain after sitting any longer. I think it is that his systemic inflammation is greatly reduced.

 

I'll see if can find a link to the product we are using, and I'll come back to post it.

 

The link will take you to where I buy it. Please don't anyone be offended; I don't get paid anything fo rthe recommendation.

 

http://www.vitacost.com/nutrex-hawaii-bioastin-natural-astaxanthin-120-gelatin-capsules-1http://www.vitacost.com/nutrex-hawaii-bioastin-natural-astaxanthin-120-gelatin-capsules-1

 

 

 

 

 

 

Best wishes!

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Valerie and others,

 

I am certainly not offended when people offer up advice on what has helped them. Even if I can't use a product (like I can't take fish oil capsules, though I wish I could), there are others reading who may be in pain who would benefit. I welcome any suggestion, as long as it isn't couched in the nasty tone of if you were only X, you wouldn't have pain. That X can stand for anything from being a certain religion to praying hard enough to taking something to being in perfect shape to many other non helpful suggestions I have received in the past (and not when I was asking for any at that time either). No one is doing that here and this is one of the reasons I love this board and feel I do have friends here. While my pain is still not good, I am feeling betterr overall since i have been able to vent a bit and also all the hugs everyone is sending me. Just knowing that someone cares is helpful.

 

Thanks everybody.

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Chris, it sounds like you already know that you can't take Astaxanthin with coumadin without a risk of bleeding. It sounds like you're savvy, but I'm going to say for the sake of others, even natural supplements can interact with prescription drugs. Please always check for possible interactions whenever you are taking prescriptions.

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Do you see a rheumatologist? If not, I would ask your PCP for a referral to one.....they can help you manage what sounds like psoriatic arthritis. Me and my mom both see one and he's done wonders.

 

I know that doesn't help your issues right now....hope you get some relief this weekend.

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:grouphug:

 

For the skin I would find me some pure shea butter without any crap in it. You can probably find it at natural food stores or online. It is so lovely for the skin. Since you have RA that is what I would recommend. When you have one issue like there are always 5000 other things going on and Shea butter would be great. Cocoa butter, mango butter and avocado butter are also nice.

 

Which I would use would depend on any allergens. Shea is what works best for me. If you wanted you could melt some calendula petals in it for some extra healing.

 

 

I have a chronic pain issue as well. Some days can be really difficult. :(

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Just sending hugs for you, Chris. I'm sorry everything is so ridiculously miserable right now.

 

I don't know if this would help, but dh has an inflammatory condition, and he has been helped tremendously over time by taking 12 mg of axtazanthin daily. He started out taking krill oil, but then we switched him to the isolated compound, and we've been using some that is sourced from blue-green algae, b/c I like that it is sustainable and non-allergenic. he used to get up from a chair and hobble for the first 20 steps until he "unkinked." After three or four months of his taking it, I suddenly noticed one day that he wasn't walking like a geriatric person any longer. I asked him about his pain level, and he said he didn't have that same pain after sitting any longer. I think it is that his systemic inflammation is greatly reduced.

 

I'll see if can find a link to the product we are using, and I'll come back to post it.

 

The link will take you to where I buy it. Please don't anyone be offended; I don't get paid anything fo rthe recommendation.

 

http://www.vitacost.com/nutrex-hawaii-bioastin-natural-astaxanthin-120-gelatin-capsules-1http://www.vitacost....atin-capsules-1

 

 

 

Best wishes!

 

Ya know I have degenerative disc disease and I do need things for inflammation. I just happened to see krill oil in the HFS the other day and thought "WTH?" if I had only known! I will give that algae stuff a shot, thanks for mentioning it. :) I will try anything.

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I have factor V Leiden and when you have had more than one blood clot, you are a lifer.

 

Whooops! I thought it was for general heart problems, as blood thinners are often prescribed for that.

 

I would talk seriously with the doctor about your need for pain control. You aren't supposed to take NSAIDs because they are also anti-clotting, but if your blood pressure is low enough, you can probably get the okay for occasional doses. Also, aspirin is worse than ibuprofen, and it's the second that you want to take.

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I used to be on Lortab 5/500 which worked well and I was supposed to take it three times a day whether I felt pain or not since if I waited for the pain, the medication wouldn't stop it. Then when I moved here, the jerk of a rheumatogist here didn't want me on it, even though I have been on it for seven or eight years with no increase in dose so obviously I am not a drug addict.

 

Can't you get a new rheumatologist just by calling someone on your plan?

 

Or storm into the office, say, "I'm in agony, and this is unacceptable," and bulldoze him until he does what you want. I've been pretty good with that. ;-)

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Chris, it sounds like you already know that you can't take Astaxanthin with coumadin without a risk of bleeding. It sounds like you're savvy, but I'm going to say for the sake of others, even natural supplements can interact with prescription drugs. Please always check for possible interactions whenever you are taking prescriptions.

 

 

Jean, I've known you for a very long time on this board, and I know you to be a thoughtful and well-informed woman.

 

However, I just couldn't find anything in my admittedly limited searching (30 minutes before I posted to be sure that I wasn't too enthusiastic) that would bear out a general concern about astaxanthin and bleeding. None of my "go-to" places, UMMI, the PDR for Supplements, PubMed, or WebMD mentioned any such concern for AX, in fact I didn't find a caution or contraindication *anywhere* on any of the pharma cites on the net that mentioned blood thinners or coumadin and AX. Krill oil I would *think* would have the same cautions as fish oil, but I haven't researched that recently.

 

I did find some fairly dire wording on a Natural Resources site (listing itself as a source for alternative medicine), but when I looked at their list of "selected" journal articles, there was nothing at all that would support their verbiage. When I then clicked on their "for professionals" page, it required a paid subscription. I saw that their wording was used to populate several other sites, but the dire wording was not re-copied anywhere else.

 

I've cut and pasted what I did find below (my comments in blue), and I only found two journal articles that adressed AX and blood flow or clotting:

 

1) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2533721/ a positive effect on blood rheology, as measured by a ~4% drop in transit times after a 2 week trial of 6 mg daily. That might point to thinner blood, but the authors didn't specify what mechanism led to lowered transit times. They simply considered the findings to be positive.

 

2) Serebruany, V., Malinin, A., Goodin, T., and Pashkow, F. The in vitro effects of Xancor, a synthetic astaxanthine derivative, on hemostatic biomarkers in aspirin-naive and aspirin-treated subjects with multiple risk factors for vascular disease. Am J Ther. 2010;17(2):125-132.

Am J Ther. 2010 Mar-Apr;17(2):125-32. doi: 10.1097/MJT.0b013e31819cdbbd.

The in vitro effects of Xancor, a synthetic astaxanthine derivative, on hemostatic biomarkers in aspirin-naïve and aspirin-treated subjects with multiple risk factors for vascular disease.

 

Source

Heart Drug Research Laboratories, Johns Hopkins University Baltimore, MD, USA. Heartdrug@aol.com

Abstract

 

Astaxanthine is a polar carotenoid metabolite derived from a proprietary prodrug, Xancor, which aligns parallel with the membrane phospholipids exhibiting potent antioxidant, anti-inflammatory, and cell protective properties, although the precise mechanism of action is unknown. This prodrug is currently under development for hepatic, neurologic, and vascular disease indications. Considering established links between heart disease and stroke with platelets, coagulation cascade, and fibrinolysis, the aim of the study was to assess the effect of asthaxantine on human biomarkers of hemostasis. The rationale was to test a hypothesis that the drug may diminish activation of hemostasis, making it a potentially attractive addition to treat patients with vascular disease. In vitro effects of whole blood preincubation with escalating concentrations of asthaxantine (0.3 microM, 1 microM, 3 microM, 10 microM, 30 microM, and 100 microM) were assessed from 12 aspirin-naïve and eight aspirin-treated volunteers with multiple risk factors for vascular disease. A total of 25 biomarkers were measured, of which 12 were related to platelet function, 10 to coagulation, and three to fibrinolysis. Platelet aggregation induced by ADP, collagen, and arachidonic acid and exp
ression of CD31, CD41, GP IIb/IIIa, CD51/61, P-selectin, CD63, CD107a, CD151+CD14, and CD154
were not affected
. Coagulation indices such as aPTT, prothrombin time, thrombin time, fibrinogen, antithrombin III (antigen and activity), Protein C, Protein S (free and activity), and von Willebrand factor
remained unchanged
after incubation with astaxanthine. Fibrinolytic activity biomarkers such as plasminogen, D-dimer, and FDP
were also not affected
after in vitro pretreatment of blood samples with astaxanthine. In the projected subclinical (less than 1 microM), therapeutic (3 microM to 30 microM), and supratherapeutic concentration (100 microM),
astaxanthine in vitro does not affect platelet, coagulation, or fibrinolytic indices
in either aspirin-naïve or aspirin-treated subjects. These results are important for the assessment of the safety profile, but remain to be confirmed preclinically, in vivo, and ultimately in the clinic.

PMID: 20305399 [PubMed - indexed for MEDLINE]

 

This is both in vitro work and with a synthetic AX clone. I concede that those two factors don't inspire a lot of confidence for real life application.

 

 

3) From NYU Langone Medical Center page

 

As a widely consumed nutritional substance, astaxanthin is expected to have a low order of toxicity. In human studies, no serious adverse effects have been seen.
Maximum safe doses in pregnant or nursing women, young children, or individuals with severe liver or kidney disease have not been determined.

 

Finally, I saw in a number of places that there appears to be some promise for AX use in RA. I didn't spend time looking at the research; perhaps Chris might like to pursue that. I copied one citation, but she may find others that would be more instructive.

 

Nir Y, Spiller G, Multz C. Effect of an astaxanthin containing product on rheumatoid arthritis. J Am Coll Nutr. 2002;21:490.

 

Jean, if I've overlooked something important (it is entirely possible) would you post it?

 

And, thank you for who you are and all you do for the Hive. : )

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Ya know I have degenerative disc disease and I do need things for inflammation. I just happened to see krill oil in the HFS the other day and thought "WTH?" if I had only known! I will give that algae stuff a shot, thanks for mentioning it. :) I will try anything.

 

Pay really close attention to your body if you take it. There is some concern about calcium interactions, although I wasn't paying attention to what it was. If your degenerative stuff has anything to do with calcium issues, you should be really careful to have a baseline before you start it, and then follow up.

 

There seem to be a lot of good things it can do for you even at lower doses, but please be well informed. : )

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Valerie, my search did not show a definite interaction but a number of sites said that it "could" have an increase in bleeding risk and that it should only be taken with Warfarin (coumadin) under a doctor's supervision. They were alternative med. sites. The regular med. sites I looked at didn't have anything listed under astaxanthin under than a very basic description of what it is. I don't really trust listings when nothing is there because sometimes nothing is there because they don't know much about it, not because there really is nothing to list! I did just a very cursory search but felt like it was enough to caution people to at least check with their doctor - which is what I meant when I said to check for interactions.

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THere are times when I have to take things that are interactions- for example, there are no anti-yeast infection drugs that do not interact. I try to take the lowest dose for the fewest days, if I need it and have to go get my blood tested soon after.

 

Yes, I am one of those who gets my blood tested a lot- fortunately, I am now a patient of a coumadin clinic and now only get pin pricked often. I still get monthly blood tests from the rheumatologist.

 

Valerie, I will look up those cites and then bring them in to the coumadin clinic. THe one study seems to say it doesn't affect prothrombin time which I believe is what the INR test is for. Fortunately, my INR has been stable the last two months so I only need to go once a month. Earlier this year, I was going twice a week and needing shots lots of times.

 

Last night, I was finally able to go to sleep after about an hour of lying there- in pain. Then I woke up this morning with only some pains- usual arthritis stuff- did my morning chores involving feeding animals, taking out the dog, unloading dishwasher, making coffee, etc. and then took my medicines. Bad pain in back is back but medicines aren't working yet.

 

Again, thank you all for suggestions and hugs.

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Valerie, my search did not show a definite interaction but a number of sites said that it "could" have an increase in bleeding risk and that it should only be taken with Warfarin (coumadin) under a doctor's supervision. They were alternative med. sites. The regular med. sites I looked at didn't have anything listed under astaxanthin under than a very basic description of what it is. I don't really trust listings when nothing is there because sometimes nothing is there because they don't know much about it, not because there really is nothing to list! I did just a very cursory search but felt like it was enough to caution people to at least check with their doctor - which is what I meant when I said to check for interactions.

 

 

 

Interesting how our interpretations of that varied. : ) About the bolded: because there were always a number of interactions and contraindications listed, and specific cautions about its interaction with specifically listed meds and herbs, but not about blood thinners, and because there was information about a specifically enumerated list of other medical conditions that might be affected, I interpreted the information presented on the medical sites to indicate that there was a fair amount known about AX and its interactions.

 

Agreed on the work with your doctor part. I've become assertive over the years about insisting that a doc listen and partner with me, and in a couple of cases, he's come away with a broader understanding of the issue. I've also had to find a new doc on two occasions, as some are not amenable to allowing a patient to refuse a course of treatment (statins, specifically).

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THere are times when I have to take things that are interactions- for example, there are no anti-yeast infection drugs that do not interact. I try to take the lowest dose for the fewest days, if I need it and have to go get my blood tested soon after.

 

Yes, I am one of those who gets my blood tested a lot- fortunately, I am now a patient of a coumadin clinic and now only get pin pricked often. I still get monthly blood tests from the rheumatologist.

 

Valerie, I will look up those cites and then bring them in to the coumadin clinic. THe one study seems to say it doesn't affect prothrombin time which I believe is what the INR test is for. Fortunately, my INR has been stable the last two months so I only need to go once a month. Earlier this year, I was going twice a week and needing shots lots of times.

 

Last night, I was finally able to go to sleep after about an hour of lying there- in pain. Then I woke up this morning with only some pains- usual arthritis stuff- did my morning chores involving feeding animals, taking out the dog, unloading dishwasher, making coffee, etc. and then took my medicines. Bad pain in back is back but medicines aren't working yet.

 

Again, thank you all for suggestions and hugs.

 

 

Remember that that was an in vitro study only, so very preliminary results, but perhaps reassuring enough for a doc not to dismiss AX out of hand.

 

Chris, I found a website after I posted, a site on which people listed the side effects they had had. Yes, that is anecdotal, but who cares: it is instructive. : ) My take away from that was that site was that while some people (like dh) did experience good results from it, others did not, and some seemed to have various allergic reactions to it. What I don't know is what kind they were taking (was it from krill), or if they were allergic to crustaceans anyway. I am allergic to shrimp, so obviously I won't touch krill oil. I will be giving the AX from the algae source a try.

 

So, if you do decide to try it, may I suggest that lower doses and higher vigilance on your tests would be the order of the day. The intersting part was there there were several studies having to do specifically with RA, although I don't know what the results of those were.

 

My deepest sympathies are with you on the balancing act with the blood thinners. My dad and my FIL have both danced that dance--it is life-saving, but a difficult circumstance, one that I danced with FIL as I cared for him.

 

About this morning's pain, I will pray for relief. Another gentle hug heading your way

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