Extreme Pain and High BP

[LaMemChose]

I've had insane pain for the last month related to a failed surgery from some years ago. Even though this was an area without sensation previously, I feel sharp, throbbing pain and have for four weeks. While meeting with a surgeon today to explore options to alleviate pain and do a possible repair, we discussed my BP taken at the start of the appt. It was a whopping 169/91. It's due to pain, no doubt, but was so much higher than my abnormally low, quad BP. It has been at home, too.

I'm in recovery and don't view pain meds (other than ibuprofen) as an option for myself. I've been having headaches, high BP and other AD symptoms since the pain and associated problems started last month. I get that. My been there and knows me doc is retiring and has referred me to a new guy. I'm going to ask the new doc about BP lowering meds to deal with the pain related high BP.

A repair of the cause of the pain is not possible. I'm going to second and third opinions to compare notes and make sure I'm stuck with what I have and what I was told today is how it is. I was given a non-opioid injection into the area today in the hopes of backing down the pain monster.

My questions: Any nonaddictive options I'm missing for pain relief? Are BP lowering meds for us the same as the ab gen pop? I'd think so, but there are things that work for them that don't necessarily work the same for us. I have nitropaste on hand for sex associated AD. Possible to use that to lower my BP from pain with the understanding it gives me more pain in the form of post nitropaste headache? How likely is a BP lowering med likely to cause me to pass out while the pain persists?

Ideas?

BTW, I'm decent at distracting myself from pain to a certain extent. I dig into my craft, spend more time with Wonder Dog, meditate, do visualization, am online more, etc. While I'm okay at distracting myself from my usual ever present pain, this time the new pain is outmaneuvering my internal resources to distract and redirect my focus from the pain. What am I missing that might help the pain (and lower my BP as a result) without being addictive and/or causing a high?

I have c 6/7 inc SCI, CP from birth.

TIA for input.

[SCI-Nurse]

Wow! I will try to tackle each question, but if I miss something, please let me know.

1. Regarding the AD - yes, you can use the nitropaste for any cause of AD. That will lower your BP, but as you said, gives you a post-nitropaste headache. You can take motrin, or whatever you take for headaches.

2. Taking a anti-hypertensive medication is probably not a good idea, unless your BP is consistently high. There is a potential for bottoming out or passing out and that obviously has it's own set of issues. If your BP is consistently high, a medication may be in order. There really is no BP pill that you can't take, but I would encourage you to start out with one that is considered "mild". You don't need to get the BP down to your normal quad level, just to a normal level.

3. Regarding pain management: there are medications out there that could be used that are not addicting, such as the NSAID (celebrex, ultram,etc) category. They work better on specific sites though and I am not sure where your pain is. If your take them around the clock (even your motrin), you may manage your pain better than just waiting for it to start.

4. Distraction as you said helps. Maybe try something new to distract you - music, a movie, all might work and provide some relief.

5. Site specific analgesia such as patches with a variety of medications in them. It can be something over the counter or prescription. Again, not sure where your pain is so it is hard to say if this is an option.

6. Can try icing or moist, warm (not HOT) packs.

Hope that these help. Let me know if you need anything else.

CKF

[LaMemChose]

Thank you. I have a concern about crashing BP should I take meds for it when it is too high. I ended up on the e.r. several months ago after passing out in the bathroom from plummeting BP. Unfun.

I'll take the ibu around the clock.

The excruciating pain is in pelvis, lower left leg, ankle, foot, the places I have had fractures and/or surgeries for cerebral palsy and/or fractures over the years. My SCI is incomplete and the CP continues to rear its vengeful head. Note to others with cerebral palsy, fusions in limbs and extremities = hell in subsequent years. That bell cannot be unrung even as our bodies pull against the fusions. I've not had sensation or have lacked "normal" sensation in these areas until this pain started. The throbbing is less this a.m. where I had the injection yesterday. I know it is temporary, but I can manage better like this. I actually slept last night.

You mentioned trying something new. Yes! I found a way to crochet with my paws after all these years. It is almost meditative even if what I am making looks like apes did it with their feet. I signed up for an online class I can do at my own pace. It's a great distraction in the wee hours when my pain is at its worst.

I'll check out non-opioid pain patches.

Thanks CFK.

[willingtocope]

I'm not a doctor...not an expert...I can only relate what I've experienced.

With an SCI or neuro condition of any kind, we tend to blame each new symptom on that. I began having a very annoying pain in my right groin. It feels like there is a huge pimple right in the front that gets pinched every time I change position. Sharp, pointy. Also, slight fever and BP up just a bit.

Turns out I have kidney stones. I've passed three in the last month.

I remember "The Body in Question" TV series from the 80's. Pain is sometimes "refracted". Even our screwed up nervous system can make it hurt far from the actual problem.

[Sue Pendleton]

Ultram/tramadol is no longer considered non-addicting by most physicians. OTC capsacian patches by Salon Pas help me for larger areas if I can find the area that is the center for where the pain comes from. Some like their icey patches. Lidoderm is great but can only be used 12 out of 24 hours so best used at night. Again, try and figure out where the pain radiates from. Lidoderm patches are also expensive if you don't have prescription coverage. Good luck, ME.

[arndog]

Lameme - Why are you so adamant regarding the use of opiods? When used for pain, they don't typically cause addiction. Tolerance can occur. But for non addictive personalities, when the pain ends, it is relatively easy to give up opiates.
Arndog

[LaMemChose]

Willing, you sharing your experience is appreciated. It has been typical of me, too. For once, the areas where I am in pain are quite near where I have hardware and have had bone fractures repeatedly. The cerebral palsy is not helping and the pain is not helping it. Ditto for the BP. Mu body is fighting itself and I'm the loser.

Sue, thanks for the info on those items. I'll go for those (exception Tramadol) and see what works. Fortunately, I have rx coverage through Medicare Part D.

Dr, Arn, I appreciate your perspective. I'm not passing a judgment on any other person on this site for a decision to use opiates or almost anything else working for him/her. I know what happened to me before when I was rx'd a combination of opiates and benzos. It got ugly fast. I have an addictive personality and went through hell to get off the meds and to stop drinking. I'm unwilling to go there again.

The single exception to no pain meds over the last decade plus was very immediately post op. I took three doses of pain medication in less than 24 hours once home. I realized my pain level was tolerable (to me) and stopped. I took what was necessary to that point and ended it there.

I'm not setting myself to be a martyr. Addiction is deadly as is intractable pain. I understand. I don't like it. It is what it is. I'm making the choice I need to make for myself for where I am with this pain now.

Here's to kinder, gentler, less painful days for us all.

[~Lin]

Have you tried any of the neuro/seizure type meds for pain like neurontin and lyrica? What about a TENS machine? You also may be interested in a topical NSAID, which can be used in addition to oral nsaids as long as its discussed with your Dr and dosages worked out so that you're not exceeding maximum dosages from the combination. Something like voltaren gel which you can apply directly to the spots that the pain is, and a compounding pharmacy can make topical nsaids that are better absorbed deeper in for certain areas.

I'm assuming many of the things that assist me will not be possible due to the lack of sensation. For example cold makes my pain worse but heat helps. However heat and cold can be dangerous without full sensation... Another is positional, which may be a option if you're able to find any positions that help relieve the pain just a little. When my pain is unbearable I'm unable to stay still, and find certain positions that make it even a teeny bit better and rotate through them. Then for me compression is another that helps with my joint pain, so applying soft braces assists but for you that could be a pressure sore risk...

[arndog]

Thanks for the explanation LaMeme. I understand but also hate to see you suffer...

[LaMemChose]

Lin, I take neurontin for the both epilepsy and the neuro pain. This pain "feels" more orthopedic than neuro. If you have broken a bone pre-SCI, that is how my brain is reading this in most of my lower left extremity. I have what "feels" like multiple broken bones in multiple areas. That is in addition to my "regular" neuro pain. The neuro pain seems worse since the new pain started a month ago, but I am thinking my brain can only handle so much pain stimuli and it makes everything worse. That's just a guess.

My bones are degenerating in my limbs, according to the doc, This is especially true of my left leg. It's the side that has taken the brunt of the trauma over the course of my life. It scares me for my spine. So far, so good other than '93's SCI. FML.

Dr. Arn, thank you. I hate to see any of us suffer. It includes my own suffering. If I ever again have pain to the point suicide seems a good idea (that was shortly after the neuro pain started post SCI), I'll have to consider meds of some sort. I'm not there and hope I don't go there again.

I talked to my family about changing up some of how I manage my life. I want quality of life. It means I need more help with the day to day than I have had. My family and friends have been phenomenal, but I want my relationships to remain unencumbered by caregiving. The exception will be in an emergency. I start the hunt for more paid help tomorrow.

My doc asked about my recovery, i.e., length of time opiate free, what I had ever taken and had not, etc. In his words, I am "recovered." I understand what he is saying. I also know what happened when I was previously in pain management. My life went to shit quickly and stayed there until I went to treatment and got into recovery. I was pretty bat shit crazy in those years. The emotional pain of knowing how I was at my worst has remained. I regret those years to this day. I may always. who knows? It is its own lower rung in Dante's Inferno.

I managed to sleep today for about four hours after sleeping (some) last night. I'm still tired. The pain has exhausted me. I can tell I will sleep again tonight. I'm going with it.

Thanks for input, guys and gals.

[Sue Pendleton]

Mem, you might ask your doc about the Voltaren in some form or Indocine (sp). Neither is addictive and my husband has been prescribed both at different times to help with bone pain from anklosing spondylitis a form of arthritis that robs bones of calcium. Both have side effects to be aware of especially if using Indocine for any length of time. Once he is back in remission those get tossed fast. Would one of the bone restoring injectables work for you? I think you have a few more options this time around and can hopefully get the bone pain under control without reenacting the Inferno.

[LaMemChose]

Mem, you might ask your doc about the Voltaren in some form or Indocine (sp). Neither is addictive and my husband has been prescribed both at different times to help with bone pain from anklosing spondylitis a form of arthritis that robs bones of calcium. Both have side effects to be aware of especially if using Indocine for any length of time. Once he is back in remission those get tossed fast. Would one of the bone restoring injectables work for you? I think you have a few more options this time around and can hopefully get the bone pain under control without reenacting the Inferno.

Sue. I'll ask about those. I have more questions than answers about all of this.

My bones and teeth have been too soft from the start of life. Breaks happened too easily in bones and my teeth broke far too regularly. My baby teeth were capped before kindergarten so I would have usable teeth. As my adult teeth came in, there was some improvement, but not much. My bones have run a similar course.

A life with CP means the bones were pulled too much, too long. Replacing failing bones with metal was discussed, but what is the point? Wherever I have had hardware or fractures, there is more deterioration.

No more short distance lurching for me. Wheels or nada. I'm okay with that. Just rid me of this pain.

I pray the inferno remains in the past. I am doing all I can each 24 hours to stay in recovery. I can do this day. I'll deal with tomorrow when it is today.

Thanks for your input and support, Sue. My best to you, Ms. M and Jay. Many **hugs** for the humans and a head scratch for the furry baby.

[~Lin]

I've never used Indocine but like I said I highly recommend asking about voltaren gel. And especially if you have a compounding pharmacy nearby, about getting the deeper penetrating nsaid topicals. Thats the one negative with voltaren gel is that it doesn't penetrate too deeply and on some larger areas the effect is noticeably less. Its still worth it though, especially when in useage with oral nsaids. I'm unable to use oral nsaids and voltaren gel allows me to use something right where I'm hurting and not have the stomach effects of orals. Used in combination can be much more effective, with the systemic effect of the ibuprofen and then added assistance of the topical right where you're hurting.

[LaMemChose]

I am adjusting up, getting more help where needed. I gave myself a few days to mourn my body's betrayal. Pity party ends in fifteen.

When life blows, plan a trip. There are doc appointments I need to keep and then, I'll fly to see my bestie.

This ain't nothin' but a setback, right?

Onward.

[SCI-Nurse]

Indocin (indomethacin) is a powerful anti-inflammatory drug, often used for rheumatoid arthritis, and sometimes for HO in people with SCI.

Indochine is French for Indochina, and is the name of a movie from 1992 staring Catherine Deneuve....

(KLD)