Extreme Joint Pain Throughout (Top voted first)

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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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Hi Dave i have severe Rheumatoid Arthritis and fibromyalgia the doctor prescribe prednisone it's a steroid and it helps a lot with the pain but it does make you eat a lot also

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6

Hi Dave, hope this finds you well! First and foremost I'd look into getting those discs fused in your back if possible. I've had 4 neck & back surgeries over the past decade; I'm walking again, mostly pain free & rarely with a cane. I struggled getting off the opiates, so don't use them for too long and depending where you are located - medicinal cannabis was a huge help getting me off pain pills and giving some relief without being all doped up on pharmaceuticals. You'll want to try varying differences of THC to CBD ratios...good luck!

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Thank you for the response. This joint pain quite literally started in mid 2009 and became progressively worse in waves. My pain mgm't doc (who sent me to a neurologist/rheumatologist and diagnosed me w/ PMR-poly myalgia rheumatica) got me off the oxy's and tried a few other drugs (cymbalta [?] it was awful) and finally onto Nucynta 100mg 4x a day, valium 5mg 3x a day, Lyrica 150mg. Prior to these increased/heightened attacks...I was able to deal w/ the pain. The two herniated disks and 1 broken disk were the cause of the sciatica...learning how to walk a certain way by planting my right foot down as I walk w/ a cane has become critical in avoiding sciatica attacks. My pain mgm't doc was great in that he listened and when I did not feel the need to take Lyrica or Nucynta he was OK w/it. I received facet inj's. as needed. Then I moved. I have settled in and things seemed 'normal' for me until I went to the same pain mgm't co.'s office up here where I moved to and the doc is the opposite of my doc that I had for the last 8 years. He changed my med's- put me on 200mg ER Nucynta 2x a day and I have the 100 mg Nucynta for break through pain. He would not prescribe the adderall I need in the AM as I can not have coffee due to Barrett's esophagus so it takes me hours to get going in the mornings.

The Nucynta 200mg ER does not last for 12 hours-more like 8 hours...and both Nucynta and Lyrica cause weight gain...so I try to not take them anymore than is necessary to bring pain levels down from sciatica/joint pain-myalgia episodes. Now, out of nowhere I am getting debilitating joint flare ups that are extremely painful and just trying to get out of bed is a 15 minute chore. I can not walk per se...I shuffle...this a pain event that is a solid 10. It abruptly calmed 7 days ago -but not totally as when I wake my hands will not make a fist or grab; pain in all joints at around 5/6 level and the Nucynta 200mg ER coupled w/the Nucynta 100 mg and the Lyrica 150 mg 2x a day keep me functional. When I had that extreme flare up joint episode the drugs did very little. I do not care for the pain mgm't doc at this office but I do like the PA and I have been seeing her. This last visit I asked her if I could share something OFF the record w/her and she said 'of course'. I told her if these extreme joint flare ups become/occur w/any regularity I would rather just remove myself from the equation as having that much pain- lasting for about 36 hours straight-then it backed off for 12 hours and came back again....this joint pain so severe you do not want to risk sitting down before you check everything and make sure there is no chance you might have to get up because you forgot something!

Getting up is a very painful event. Using the head is a painful event. And yes, they did an MRI back in 2011/2012-my previous doc wanted one. I have use a stand up MRI facility because of the Barrett's. And to make things more depressing I read a medical article where the average person should not-NOT-have more than 3-5 CAT scans in their lifetime; in 1999 I must have had at least 8+ because of gastric surgery; then again in 2007 at least 6+...so I am sort of screwed already w/all these CAT scans that have been done.In the military I was on a base where they sprayed agent orange/agent blue and some of the drums leaked out and we walked through the stuff without knowing it until it seeped into our boots and we had sort of a 'hot foot'. The VA says there was not any agent orange/agent blue or white on Guam as I thought back in 2009/2010 when the myalgia kept growing worse that it might have been from exposure to those smelly chemicals. I also wanted the VA to help me w/my back as the damage to my back was during my military service as during heavy rains I slipped and fell on my butt/lower back and fell down a set of cement stairs.

The back injury was severe enough to bruise my lower back but the VA said there was no connection even though I had lower back problems my entire life. The VA says no even though my Honorable Discharge and DD214 clearly states I was discharged due to medical reasons! My PA has me scheduled to go see a rheumatologist that is very highly regarded-problem is he is booked until 7/27 so I made the appt. for 7/27. I cannot live with a flare up like this last one where I could barely move my arms/fingers and shuffle around-even shuffling is painful! I have lived w/ myalgia and sciatica attacks for the past 8 years- but this new joint flare up is unlike anything I have ever experienced and I just can not deal with it as it nearly immobilizes me! even sitting down-NOT moving -the pain is off the charts. Perhaps w/some luck; I do NOT have one of those extreme myalgia episodes again before I see the highly regarded specialist doc. Pardon me if I rambled. Pardon me if I left out words or misspelled them....thanks again for the courteous response.

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5

Hi Dave I'm a 62 yr old male myself. I was super man my entire life until 38 yrs old i suddenly had severe joint pain in entire body. It started in fingers then back hips knees arms etc . My primary care was a great dr. With the extreme speed of this arthritis onset. He had a blood test performed to test for HIGH IRON. I came back at 1400mg of iron, not the 0 -250 range we normally are at. I further had DNA test on blood found out i had a often overlooked blood disorder called herditary HEMOCHROMOTOSIS. This disorder is a mutation in genes which your body cant rid itself of iron. High iron causes severe arthritis joint pain joints locking up heart disease, gastro intestinal problems, anxiety, pain of all types, confusion etc. Treatment is immediate, removal of 500ccs of blood weekly until iron levels meet excepted levels . It took me 5 yrs of weekly phlebotomies to get back to safe area. Now a 90 day removal fir life. I still have arthritis joint pain but not the total body lock up as before. You should get tested for this easy to confirm or deny disorder that many drs overlook.

Best wishes
D.

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7

Dave, Have you ever taken the acne medication Accutane? What you are experiencing sounds like someone suffering from the devastating effects of this drug. I hope you haven't taken it, but if you have it may help to know why all this pain is occurring now.

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8

I know you said you didn't care for the Cymbalta.... but I am on a Cymbalta and Adderall combo. Due to Cymbalta making people so very tired. Plus studies are finding that the adrenaline from Adderall helps give you the push to go and move. I was crushed by a horse at 9.

Total "experimental" rebuild of hip and lived in hospital for over a year. Decided to ride again a few years later after I had learned to walk again and was cleared by doc. Only to end up with 3 more debilitating fractures over the years. Now at 45, my docs are amazed I even walk . But..... hang in there. This combo seemed to work fairly well. Also I wear strongest Butrans patch and have Vicodin for breakthrough pain. Doesn't matter if people want to stigmatize me..... all I know is after trial and error over years, this ended up working "fairly" well. Still walk with cane, cold and rainy days... forget about it. But I can see how people would not care for Cymbalta on its own.
Hope you find relief.

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9

For me Prednisone has nasty side effects, dealing with damage of my foot tendons, dental problems, and foot pain, and joint pains....Prednisone is GOOD for a short time for what it is prescribed.. And a short time....being hungry and gaining weight is the least of the side effects..I will NEVER touch another pill of prednisone. I'd rather endure the pain which is usually on the short side, then with the long stretched out side effects, and costly (teeth) PT etc.. It can take month or more to get out of your body: side effects while taking it,side effects when tapering off, and then comes the real surprise..the damaging side effects I am going through for the past 3 month....pains. not able to walk or sleep from the pains..

Read up on the side effects of prednisone, as most MDs will not tell you... It's the med from HELL....and a wonder drug when needed..but weigh in the consequences....use any form of turmeric- ...topical as well as drinking or eating as a spice.....avoided difficult surgery for a friend of mine..also available in pill form...good luck

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10

Hi Dave: I had great success in fusion--had my entire lumbar fused---26 screws, 3 cages and two rods. That was seven years ago..before that time I had numerous surgeries starting in 1970 that were minimal in success. The fusion worked..it was a long recovery, BUT WORTH IT!!! The strongest meds I was on was hydrocodone 10's(after initial surgery recovery meds). I get around well, and am walking straight and minimal pain. I would definitely suggest it. Check our your options, orthopedic groups. Google them, and ask friends for suggestions. good luck, and I will be available to answer any questions,

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11

Have they checked you for Fibromyalgia? I have and had severe joint pain for years and it took them several years to diagnose me. Sometimes my pain is so severe I cry daily the pain never goes away no matter what I take

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12

Hi,
I wouldn't mind betting it is the Lyrica causing you all this grief. It's a horrible horrible drug with so many non listed but known side effects from Pfizer. Speak with your GP as they are now becoming aware of the problems Lyrica now cause, if it is Lyrica you will have to be weaned off it.

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18

I am seeing a rheumatologist on or possibly before 7/27 and I will present al ned's being taken (BP, Crestor, B/S med's) -perhaps your post will be of benefit to others as I am all for deleting as many daily med's as possible. Many blessings to you and those you love.

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19

Have you tried an elimination diet? Dairy was causing my joints to hurt. Now I stick to goat milk/yogurt.

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20

Have you tried an elimination diet? Dairy was causing my joints to hurt. Now I stick to goat milk/yogurt. For the person whose nephew has Lyme disease, check out research on,Teasel (Radix Dipsaci) root.

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26

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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29

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

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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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4

Have you ever been checked for Lyme Disease? Your symptoms do sound like my nephew. When they were finally able to do special testing to confirm the diagnosis, he tested positive. They still aren't sure what type. Treatment and recovery has been rocky, but he is getting better. I do think this disease is often missed and allowed to progress without treatment. Plus, his PTSD hasn't helped him either!

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TYVM for the med's up on Lyrica. I will ask a specialist they want me to see who is supposedly one of the best in the country. Problem is he is booked out to 7/27/17. They said if there anyway they could get me in sooner, they would. Best wishes and blessings to you and your loved one's!

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My empathies are w/you Deborah. Mine literally came out of left field starting w/ a hand and spread quickly to the point I could barely ambulate w/cane. I eventually found a pain doc who got me off oxy-contin and onto a drug that handled the pain down to a 4/5 as I was dealing w/sciatica and for the joints he tried some drugs that would make it so less painful- Cymbalta-was trippy and I could not sleep. Then he tried the Lyrica and that seemed to work. This was in the early stages back in 2009/2010. This past 6 months have been the worst ever. (forgot to mention that my pain doc had me go see a rheumatologist; after a half dozen visits/exams they diagnosed me as having PMR (poly myalgia rheumatica) and reaffirmed my pain doc's med's....and said I was very fortunate as some pain doc's dose their patients w/multiple drugs that makes the patient high and they become addicted. I have no feelings of being high; but I know when the drugs kick in as even though my legs feel like they are made out heavy metal and ache, my joints begin calming down. In the AM when I wake up-8x out 10 my hands do not work. They are like prosthetic hands- I cannot use my fingers nor open my hands-w/two hands I can drink some water to get my med's down. From what my pain doc told me- PMR is the big brother of fibromyalgia. The C reactive protein test constantly changes and the drugs have turned me into an overweight diabetic. My current GP said if I do not get my A1C back under 5.0 when I see him next he is going to put me on insulin. He also referred me to a Dietician to help me w/food choices as I need to drop 50 lbs. And to be blunt, when I get those joint flare ups ALL throughout my body I seriously think the best way to cure this gross, overwhelming pain, radical changes in diet, is to punch my own ticket. I have no family nearby. No one will really care. The world will keep on spinning and I will finally be at a peaceful rest. I have been thinking that it would be best to do this in or outside my home as I do not want to upset my pup's and if I am outside, I will take a smaller firearm w/just one round in the chamber. I will call my local PD ahead of time so there will be no chance a child could find/see me. I have decided to wait until the specialist does his exam/tests and if they work. My best wishes to you and those you love. (I am in my 60's-former Marine and Vietnam Vet- full life; but these last few years have grown more worse each year.)

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16

No Terry. No accutane used. TY for asking and hopefully helping others who have taken it...to question the side effects.

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