Extreme Joint Pain Throughout (Page 2)

I have severe joint pain throughout my body. It has been extremely severe these past few months. Unable to drive on bad days. Barely able to walk. Milder attacks allow me to drive and walk w/ a cane due to herniated and broken lower disks. My PM doc has put me on 200mg Nucynta ER 2x daily and 100 mg Nucynta for break through pain. Most recently they put me on 30mg Morphine ER which did not seem any better than Nucynta. Does anyone have any idea why every joint in my body would become so painful as to immobilize me? On bad attacks the Nucynta 200mg ER, 100mg for break through pain and 150mg Lyrica barely make a dent in the pain. Besides weight gain, I now have diabetes as I have been taking Nucynta, Lyrica for over 6 years but the 200mg ER was recently added and I was removed from the Nucynta 4x or as needed- some days I would need just one Nucynta 100mg/other days 2 or 3...rarely did I ever take 4 in a day. The Lyrica 150mg helped at times but now with these extreme joint flare ups it seems no drug can stop the pain. I hate Oxy's as besides the terrible constipation they made me feel really 'drugged'. Nucynta does NOT affect me like that nor do I feel any 'drug high'-same with the Lyrica 150mg...sober as a judge. These past 6 months the pain has been so severe I have considered bringing this to a final conclusion. If anyone has experienced extreme joint pain throughout your entire body for days on end and with no relief from med's I would be grateful for any suggestions you may offer. I am going to see a highly rated rhuematalogist (sp) but he is booked up until late July. Thank you for anything you may think I should know.

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I am very sorry to read of your pain...and I truly empathizes w/ your myalgia. My former pain doc gave me amphetamine salts (adderall) and they were so helpful in getting me going in the AM; but then I moved and though I stayed within the same medical group- the pain doc up here refused to give me adderall-that was a tough slog waking in the morning (can not drink coffee) and no adderall to wake me up quick, give me focus. I must confess that one less pill to take was good. But then I got blindsided w/this wicked myalgia that lights up every joint in my body-pain so severe I am unable to get up at times; when I try to rise, the pain in my lower back and hip joints puts me right back down. I have lived through all sorts of various types of pain before (former Marine-Vietnam Vet) and I can say that this interior joint inflammation is off the charts and my empathies to those who wake each AM and find it an arduous chore to just get out of bed ( and when you go to sleep-if you say/think that you would not be ungrateful if you did not wake up as you are so tired, worn out from this chronic pain...I empathize w/you...as rarely a night goes by when that thought does drift through).I am scheduled to see some renown rheumatologist but he booked up till 7/27-so hurry up and wait at times. My best wishes to you- you are very fortunate to have a doc willing to give you an Rx for adderal as it truly does wake you up, gets you to focus and you get stuff done!

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TYVM for sharing Don. That is NOT an avenue anyone has tested me for and I will make sure I am. It would be nice to know if I did a monthly blood donation that it would help reduce the pain in the myalgia...when I say pain...in reference toward others who suffer this through this level of pain...something is really off in my system/blood to cause such joint pain...that's when the meds have little to no effect you sort of just want it to stop...period.

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Have you been diagnosed with fibromyalga,
I have been diagnosed with it for years. I was just like you. The only thing that helped me was the oxycontin. The oxyneo, just about killed me. Even the fentanal patch almost killed me to. I had to phone the company who made that product, because I was having no pain but day 2 and day 3.I couldn't lift my head up. I asked had any person experienced this in their studies, because my doctor wouldn't remove it, he sayed I was just wanting more. I am so never wanted more I really wanted him to find out what was causing my pain. After talking to the company they did have exactly what I was going through. .children who had cancer pain but like all patches you need fat cells to store it and released for 36 hours. So my self and I had lost so much weight 75lbs. I was floating on cloud 9 because I was getting the whole dose on day 1.and was withdrawals. CRASH. I was so happy to prove something was wrong. They faxed him the study. Next day I had an appointment with the pain specialist.
Never give up. I have celiac and can't digest that's why I couldn't take the oxyneo. I am on Statex 2nd every 4 hours and 20 MG oxycodone 6 a day as needed. This is a liquid so no need to digest same as the 20 MG oxycodone instant relief. It also melts in your mouth with water, my pain is doing better again. I could write you a book about what's happened to me since I stopped taking oxycontin, which I was on for over 10 years. And no break through pills. I honestly could write a book. But since my last surgery for spinal stenosis, at C4 C5 plus it caused spinal cord injury. Had lost all my hands arms and couldn't walk had to use walker at home and cane to help me get in and out with my husband help.
3 months being home I fell and fractured my right hip and the exray showed a compression fracture. I have to stop texting my arms and hands are so painful.

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Have you tried Motrin. Its nonnarcotic and worked wonders for me. Cant take it now because of a liver condition.

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Try vitamin D3, CBD (drops under tongue), & turmeric. Discs don't break, they bulge, herniate & rupture. Why not have the bad disc removed? If you are overweight, that's a huge contributor to back pain. Good luck.

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Dave,

Wow, sounds like things are tough. I have some similar issues myself, it is really hard to be in a lot of pain and not have any family or close friends. I am 64 and have had pain issues for 18 years, starting with cervical stenosis, which caused a lot of pain in my hands, which was a kicker, because I love to play guitar, and I had to stop. I had a real good pain management doctor for about 8 years. He really helped me. He had me on Oxycontin 20mg, 1 or 2 every 8 hours. Plus he put me on some Klonopin, which helped my nerve pain. Then I got lymphedema, which caused my legs to swell up, and made me tired all the time. He gave me a med, which is called Nuvigil, to help me have some energy, sort of like Adderall, but not as strong. Then I had to stop my job, working in a hospital, because it involved a lot of lifting. I also lost my health insurance, which meant no more brand name meds, (oxycontin, nuvigil). My pain management doctor worked with me, he put me on generic 30 mg immediate release, no er oxycodone generic. Had to stop nuvigil; no generic nuvigil. So I lost my pain doc, he had to give up his practice.

So my primary doc took over my pain management. He gave me less generic oxycodone. I had to have an emg of my neck done to prove to them that I had neck problems, as they thought I was just using the pills to feel high or selling them. Right now, I have developed bad scoliosis, which makes pain worse. I get very little sleep, I have had Barrett's esophagus, no fun. Right now, I am having lots of trouble swallowing. I probably should give up coffee, but, the caffeine really helps pain and gets me going in the morning. I have thoughts of just ending it all myself. Just feel like I should get better care for my pain, the generic oxycodone just does not work as well as the brand name med. Are you taking anything for your barrett's esophagus? I take otc Tagamet, which really helps my esophagus and heartburn. You could get a good brand name med like nexium or Prilosec from you doc. Well, wish you the best with this neurologist. Will pray for you, btw thanks for your service as a veteran!

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Sorry to read of the tough turns you have had. Barrett's is nothing you want to toy with; hopefully you have the minor stage which is often treated w/ OTC, Nexium, Dexilant, etc., I stopped taking any med's for the Barrett's unless the attack is so severe-that even cold water will not appease the attack...then I always have tums, or a nexium on me. My gastro doc wants me to have a endoscope each year. I have not had a cup of coffee since the discovery of the Barrett's back in 2007 or so. The myalgia is brutal...w/ all these dopers OD'ing; getting caught selling, abusing and partying w/ med's we use to dumb pain down and try and exist from day to day-their illegal actions bring the magnifying glass down on us and our doctors. Decent doctors are leery of writing pain med scripts because the state can audit them or potentially catch one of their patients selling the stuff on the street. I do not hesitate whenever they want a U/A and I only use one place to fill my scripts; and I do not see multiple doc's trying to get scripts from each - once the state inspectors or a pharmacy reports you for filling multiple scripts - you wind up on that list of offenders for years! My med's do not work that well I am trying to do what someone wrote to me "stop taking Lyrica" and see if my pain calms down- thus far, not so good. Best wishes to you and I would sincerely recommend you get off the oxy's- they are bad news, IMHO.

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Suzi, I was NOT over weight until I began taking these lousy med's! Both contribute to weight gain. When each leg feels like it is in a cement shoe- it is not very motivational. How do I lose weight when the drugs are causing the weight gain? Stop eating? Eat teeny tiny portions a few times a day? Can't eat fruit as my A1C is breaking into new territory. I do not eat candy. No sugar in tea, no honey. NOTHING w/added sugar. In the mean time I am dealing w/pain that is crippling. Sure wish I could walk again, run again...have my weight under control and stop having a need for blood sugar med's....but until you have suffered w/this level of joint/myalgia pain- you have no clue as to what it is like. Thx for the update on disks not breaking and only herniating, being crushed; and I'll rush right out and have some cutter just remove the 2 herniated and crushed disks and stick in some nifty plastic or metal ones- everyone who has had L-4 or deeper/lower removed has had MORE pain in 2-3 years and warned me off the surgery until I can no longer get out of bed....silly snit.

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I wish that was true that, I am loosing weight, I'm 75lbs

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are you taking med's that cause weight gain and water retention? If so, how are you getting the weight off? If it is walking for any length of time- I am restricted as to walking and no running, Please share; if it is the rice diet- I can not have rice or any carb's. TYVM!

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Dave,
Thanks for addressing my issues, My Barrett's comes and goes. I have a lot of trouble swallowing, last night I was eating a protein bar, and I thought I was going to choke , I kept forcing water and it went down. I have lost a lot of teeth so I have to eat soft stuff and eat and drink supplements. I have lost 75 pounds in the last year. I saw a dietician for some help. Being in constant pain is depressing, and pharmaceutical companys and the dea make it hard on pain patients. I am on medicare, and you have to take generics, which are not as good as brand name meds. Oxycodone is the only thing that will help my pain. I used to be able to get oxycontin which is so much better, but I cannot afford it on my prescription plan. The generics I take only work for a couple of hours and I am in pain again. I have never heard of nucyntra before. Does it give you any relief? Sometimes I get angry,but I guess that is normal. I only get a couple of hours of sleep a day. Well, I hope that you can get that appointment moved up. Best to you.

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yes, CK-going through that now...haven't had sandwich in over a month...so tired of soup and salads....ugh...any decent diet ideas? Much appreciated. Can only eat so much tuna (mercury); can't eat anything out of the Gulf of Mexico as they dispersed all that oil that was on the surface from the WORST oil spill ever on the planet w/ a chemical that got the oil down to tiny beads the size of pin head....so steer clear of any fish, shellfish, oysters-lobster-shrimp, etc, as they are infiltrated w/those tiny beads; many of which drifted to the bottom and flounder is a fish that eats of the bottom as do shrimp and lobster-what a shame....
ats off the bot

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Having trouble swallowing is NOT a good sign and you should schedule an endoscopy ASAP. Not sure why the massive weight loss-have you had your thyroid checked? Best wishes and get that endoscopy done ASAP

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Apologies as I forgot to address your question on Nucynta. They had me on the oxy's early. They are short acting. Nucynta ER lasts for 12 hours and you take it twice a day. The Lyrica helps but one of the critical side effects of these drugs is water retention and weight gain!

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Hi Dave,
I appreciate your care and advice. I have had tests fo ar my swallowing problems, also, an endocopy which showed a hiatical hernia , He said there was nothing he could do for my swallowing problems. I have had so many tests with so little treatment. You hang in there, you are a great guy.
Sam

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Hi Dave

Your whole body and joint pains sounds to me like rheumatoid arthritis. I used to suffer with same to a point of immobility. I was on meds from hospital which was now affecting my kidneys. I then consulted an Iridologist and herbologist who assisted me a lot. I had to change my diet as follows:

No read meat, fizzy drinks, acidic foods, caffeien. If I eat meat [white] and veggies then no rice and the other way round. Only fish and chicken was allowed, rooibos tea. Then herbs were prescribed for me:

Stinging Nettle
Shephards purse
Indian Corn beard
Horsetail
Yarrow tea
Comfrey
Celery seeds

These helped me a whole lot, I am now able to drive and do every other thing.

Thanks
Khuna

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Re: Mary Helen (# 3)

I am trying to get to Nucynta through insurance and have been on opioids for 3 years now. Sick and tired of the whole way it makes me feel " not whole",,not even wanting to be athletic anymore for fear of breakthrough. My wrist is permanently fractured due to a cyst the dr. missed by not reading or looking at the MRI. I have Degen Disc Disease in C456 and now all of a sudden it has changed into not being able to raise my arms and lots of pain in my head , neck , numbness in my fingers and all over shoulders , low back pain .Debilitating pain again after years of being sort of okay. Wondering if Nucynta is enogh and have heard wonderful things??

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