chronic pain

Hi Everyone,

I have posted in the arthritis forum but really did not get many replies so I thought I would try chronic pain forum. I am a chronic pain patient who has been in pain management for about ten years. I take opiates everyday which do work pretty well overall. My problems seem to be getting worse since my two level cervical fusion two years ago. I am 60 years old.

I still have neck pain and I really regret having the fusion surgery. My pain problems since surgery have been getting worse. I now have pain all the way across my upper back. It is an achy type pain which is centered over both my shoulder blades. It goes from shoulder to shoulder. I have tried anti inflams both prescription and OTC. If that were not bad enough both my hip joints hurt everyday. I have had both epidural and facet injections all up and down my spine. I was thinking maybe arthritis but I am not sure. Both my upper back and my hip joints pain keep me up at night. I was hoping to cut down and then eliminate completely my opiate meds. With my pain the way it is now there is no way this will happen. Given the opiate climate we are in I dread each PM appointment as I fear the dr saying I will be taken off my meds at the request of our Government which in my opinion has no right to come between patients and their drs.

Any suggestions or comments would be most welcome.

Thanks
dmo

OceanFisher, I can certainly relate to the arthritis pain. Osteoarthritis is a wear & tear type & part of the natural aging process. Some of us develop it at a younger age. When I was much younger I participated in a lot of activities that resulted in injuries, lol. Then you get the accumulative effect going over the years & it can sure make things rough for a person. Chronic pain just stinks!

Yes, I have been in pain mgt since the early 90's, a very long time. I have been fortunate to have very good PM drs over these years too. In this length of time I have probably had every type of treatment out there trying to get some relief. I know I will never be pain free, that is not possible. It's about quality of life. Self treating pain is a mixed bag of things. I have issues with my neck, back, shoulder & not to forget about 2 knees, lol. Something that always helps me especially with my neck, is to take a bathroom hand towel, preferably a thicker one & wet it, wring it out & nuke it in the microwave. I roll it up & put it on. But, you really have to be careful doing this as the towel can get too hot. Moist heat works much better than dry heat. I use a moist heating pad on my back. The thing with heat is you should not leave it on more than 20 minutes at a time. Heat can cause inflammation to become worse.


OTC the items such as Tiger Balm & Salon Pas with lidocaine can help, I use both. These are available in patches & can be kept on for 8 hours if I remember correctly. Sometimes I use theragesic, especially if my hips get to bothering me. It's cheap at WalMart, lol.

As far as medication goes, have you tried Mobic or even Celebrex? I know Celebrex has the warning, but it is still being prescribed. It is a Cox2 inhibitor & many people with UC or crohns often can use it as it does not affect the gut like a regular NSAID. Another medication that I have found to be very effective when I am at my worst is Toradol. Keep in mind it is not for long term use. It is available in oral & an injection at the drs office. When I was given it, it was by my PCP. I do suggest looking on Drugs.com on these medications, especially the Toradol. I do not believe it is a narcotic, therefore, you would not be violating your Contract with the pain mgt dr. An injection of Toradol generally lasts long enough to get me over the hump.

Last of all, do you have access to a heated swimming pool or jacuzzi? Back in the 90's I was doing aqua therapy after work. I had a good response to warm water. This involved a lot of driving to & from after working all day. Because of my response to the warm water & he asked me if I had considered buying a jacuzzi. The search was on, my husband & I checked out numerous tubs & found what we felt would be appropriate. I took the literature to my PM dr & he wrote a script for it & also filled out a medical form provided by the hot tub place. It was consideration a "medical necessity" & we paid no sales tax on it. We bought a new one this past November & the company saw my original paperwork & honored this as well without current paperwork from a dr. Let me tell you, the new ones today have vastly improved over the older models. Even the literature states aqua therapy. This tub has over twice the jets & I can move around from seat to seat & hit lots of spots, lol. Loungers take up a lot of room. If a person is tall that is a problem too.


Being 65 now, things can get worse as we age. I learned a long time ago we have to keep moving. That needs to be a top priority. The old saying move it or lose, boy is that ever a true statement.


Sorry for the length of the reply, but these are some ideas off the top of my head. If I can think of more I will post them here.

Susie
Moderator in Chronic Pain & Psoriasis Forums

Hello and thank you to both Darla and Straydog. I appreciate any and all comments. I have a primary care appointment in about a week or so and will try to get some additional testing done.

Chronic pain is such an awful situation to live with. I truly believe it changes us deeply to the core. last week I had to visit the ER as I had flank pain beyond what I could endure. I knew what it was after about fifteen minutes. I had yet another kidney stone. I seem to get them every few years. I have had them since about age 30. This last one was the most pain I had ever endured. I could not imagine having to live with that intense amount of pain for any length of time. I was fortunate my dr that night was kind and compassionate. He looked at my records which showed all my spine surgery and treatments. I was worried as I am a pain management patient. Thankfully he did not send me home without treatment. I literally could not walk as the pain just took my breath away.

I can not believe how our country has changed so much when it comes to chronic pain. I always believed we lived in a country where those who were in chronic pain would be taken care of. It seems to me now the CDC and the DEA have some sort of hidden agenda against opiates. Withholding pain control from the chronic pain patient will never control the illegal flow of drugs into this country. All it does is hurt the honest people who are left to suffer.

Again thank you for your help
dmo

Hi Susie and thank you for your time and comments. I totally agree about the part of living two different lives. I break mine down to the before 55 and the after 55 time periods. lol. I had pain before 55 but was able to deal with it and keep working. Now, no way can I work any longer. I have multiple health issues also. We do seem to have some things in common. The issue so near and dear to my heart is the opiate crisis. I also could go on and on about it for hours. What gets me is the media sensationalizes the whole thing out of proportion. Not only this they only report one side of the story. Just as the CDC misreported overdose numbers you don't see the media seizing on this to make a point. I have read story after story of people either taken off their meds or drastically cut back. Leaving people to suffer in pain is such a sin in my eyes.

If my life of pain is not bad enough, I was just diagnosed with cancer a month ago. Now I have who knows what to look forward to. I have lots of testing coming my way before my drs can even formulate a plan for me. I fortunately have an oncologist now to help do all this. I have a good pain management dr and feel fortunate to have her taking care of my pain.

Again thanks for the support.
dmo

Thank you Darla. I look forward to hearing from you. I appreciate all the help and support I can get. Just talking with others who know what it feels like to live in pain is so helpful to me. I would not wish any of this on anyone but am so glad I don't have to do all this on my own or alone.

My heart goes out to everyone here. I pray our government comes to its senses and reverses the cuts on opiate pain meds for chronic pain patients. Without my meds I would not even get out of bed very often. I hurt even when taking my meds. I know with my meds I can at lest take the edge off my pain for a few hours. I am all for stopping the flow of illegal drugs into our country. Causing innocent people to live in pain is criminal in my opinion. I know we do not live in a perfect world but I fear we are going in the wrong direction on pain control. Having the DEA and CDC saying pain meds are nothing more than heroin in pill form is just to much. Let those making these decisions live in pain for a month. I guarantee things would change in a hurry.

Again thank you for your concern and support
dmo

Chemotherapy reagents for cancer are not the same as chemotherapy reagents for auto-immune conditions.

Chemotherapy for cancer uses a spectrum of medications that are cyto-toxic. Many cancer drugs are platinum based and cause peripheral neuropathy (among other side effects). Chemotherapy for cancer broadly attacks rapidly proliferating cells, cells that are rapidly multiplying. This feature is responsible for hair loss and intestinal inflammation/diarrhea that accompanies some cancer reagents. Hair follicles and the cells that line the intestinal lumen are fast replicating cells and are caught in the cross-hairs of cancer agents on the lookout for rapidly replicating cancer cells.

Immunotherapy for cancer involves ramping up the body’s immune system to recognize specific proteins on the surface of cancer cells. Medications for auto-immune conditions work in opposite mode, working to suppress an otherwise overly zealous and robust immune response.

One class of drugs common to both cancer care and auto-immune care would be corticosteroids. Dexamethasone is used to alleviate nausea and fatigue associated with IV cancer chemotherapy. Dexamethasone is used to ramp down inflammation associated with auto-immune conditions that affect soft and connective tissues.

I have been on a number of auto-immune medication regimens but do not see a similarity of experience to chemotherapy for cancer. Chemotherapy for cancer is far more cyto/cell toxic.
Karen

OceanFisher I wish you all the best. Karen, I did not say treatment was the same for auto-immune and cancer. I said I am not familiar with treatment for cancer, I was just referring to the use of mtx which I thought was used for some cancers in a much larger dosage.

Good Morning, dmo. That is a lot. I can imagine having lost your father to the horrible cancer and now facing it yourself is sufficiently stressful to push it to the 'not dealing with this right now' level. Perhaps being a chronic pain patient can be helpful, for once. Maybe being seen by many dr's and so aware of your body has led you to get diagnosed much earlier than your father and lead to a much better outcome. I am not knowledgeable about your situation at all as I am sure will be pointed out but I do have relatives that have come through prostate cancer with little collateral damage. Apparently that is one of those things you get if you live long enough (like cataracts in that regard). That is what i have heard, at least, and I hope for you it is caught early and easily treatable.

I think chronic pain is one thing and acute is another, and thinking that you already have so much pain you can't take anymore is comparing apples to oranges. The acute pain hurts more but doesn't last. You can do this, dmo. You will do what you have to do. And afterwards you might just feel better than you have. Perhaps your body is in a heightened state of alert knowing there is cancer. After treatment you will be better and stronger.

dmo, I hope I did not seem to be minimizing your situation...I did not intend that at all! I am fortunate that I have never had cancer and I am ignorant as to what that feels like...physically or mentally. I am quite experienced on the other fronts though.

Here are my thoughts on the things NOT cancer (I do not want to speak on what I do not know)...Keep your expectations for the Drs low. Really low. I saw my primary care (the one I just switched to because he seemed much better) and was disappointed at how he minimized my concerns about the awful way I feel every day. I have my Rheum dr today and that will be frustrating and disappointing as well. I am trying a new one in 2 weeks. I will hear comments that lead me to think they are comparing us to somebody else who might show more symptoms. Maybe they can't walk at all. That minimizes my concerns and minimizes the correct treatment in my eyes.

This site can be helpful for getting advice from people who have been through so much. The dr's do not feel what we feel. They might be really knowledgeable but really can't relate. I don't want the hand-holding from them but I do want them to send me for any tests and offer up any diagnoses or treatments that will make my life more livable. I am pretty much somebody who hates to go to Drs and finds myself at them way too often to enjoy life. And still I depend on opiates regularly, along with Gabapentin (a miracle drug in my eyes), muscle relaxers, celebrex, etc.

If you can get appropriate meds take them and don't beat yourself up. You are doing the best you can. Be proud of that.

DMO, you are so right about taking things a day at a time. When someone has multiple health issues to deal with, it is often overwhelming & draining. Sometimes it feels like trying to figure out which fire to put out first.


Without a doubt the frenzy over opioid use is at an all time high. We have the commercials on tv stating "it all started with a prescription for whatever". I flip the channel, I am not going to listen to the nonsense. I use to read the stories splashed across the news about some politician lost either a friend or a relative to an opioid. Bottom line, the people were obtaining their drugs illegally & have abused them for quite some time. These are long term abusers looking for a high. We still live in a society of parents, relatives & friends that turn a blind eye to someone in trouble with drugs. They don't want to believe the person may have any issue. Then when something happens, it's always blamed on something else. I don't read those articles either.


The fears being instilled in us chronic pain patients is very real. There are plenty of stories out there of people that get their medications taken away or reduced. Several years before the CDC guidelines came out in 2016, the wheels were in motion to get where we are today. I keep myself aware of things, but had to step back from reading so much about this. The anxiety & fear was becoming too much for me deal with. It was in my mind far too much & causing me additional stress I simply didn't need. I just couldn't let something out of my control dictate me. I have a very good pain mgt that I am thankful for. He & I have had several conversations about all of the hysteria over this mess.


By the way, the 50% reduction number is still inflated. I think I had mentioned before, some states now have the ME's reporting the cause of death separately. If we are ever going to get an accurate number this may work. Studies have proven the number is very low.

Ocean fish:
Have you had a PET scan, CT scan, or radioactive bone scan as part of an expanded assessment of your new prostate cancer finding?

Cancer/malignancy and rheumatic arthritis (auto-immune) and auto-immune connective tissue inflammation are known to simultaneously co-exist. The thinking is that cancer causes immunological changes that cause an increase in inflammation and diffuse muscle/joint pain.

Unfortunately, certain cancers do have an affinity to migrate to bone - typically vertebrae, sternum, and proximal humerus/femur.

Share your pain symptoms and distribution with your physicians for an individualized assessment.
Karen

Hi dmo! I would be happy to email you/or you to me...I don't know if that is kosher, Susie??

I take the Gabapentin for nerve pain...It started to be prescribed for me for my neck issues. I had a 4 level vertebrae fusion in July and with bone spurs and nerve impingement etc. I was in terrible pain and general discomfort. Maybe like you have? I started on one gaba 300 mgs at bedtime and finally got some good sleep. I take a long-acting pain med and several during the day along with the gaba. I have psoriatic arthritis and connective tissue disorder. Which auto-immune things I have specifically I do not know as my rheum. is the worst and I have a new one I am trying in 2 weeks. I have had many, many surgeries...mostly orthopedic for nerve impingement in my elbow, wrist, carpal tunnel, lower back laminectomy, both knees replaced and a hip replaced. The gabapentin is a med that the Drs are happy to write at this point and they definitely take the edge off. I hope that might be helpful for you...It does help with sleep and general edginess. Especially when caused by the body screaming at you. Have a pain free day as well, dmo!

DMO, drs stopped rxing valium years ago stating the addiction problem was too much. The only time we see valium being rx'd these days is right after a person has spine surgery for a couple of weeks, even then it's real spotty. This is why the PM dr vetoed it. Talk to the drs about something for your anxiety, some are reluctant to prescribe, all you can do is ask. Anxiety medications along with narcotics took a hit a couple of years ago too.


Just to pass some information to you, a lot of drs now rx an antidepressant that helps with anxiety. And some chronic pain patients have found an antidepressant helps with their pain to a certain extent. Just some things to ponder, a little food for thought.


I saw your comment about private messaging & kept forgetting to comment. HW does not have that feature. The set up here is ancient, lol. Currently the administrator is in the process of updating HW, but it is going to be a slow process.


Emailing a member is allowed & strictly the members choice. To obtain a members email address it has to be in their profile. Only members have access to email addresses. Click on the members name & it will take you to their profile.