Help for sharp, stabbing, intense bone pain please?
 

Hello everyone,

I need some advice please.

I have yet to find any help to manage the pain that I can only describe as deep, sharp, stabbing intense pain in the bones of my rsd foot.

I'm over the top of the charts today and my Oxycontin isn't touching the pain. I'm afraid to take too much and don't know what else to do as I don't have anything else as a backup.

Please let me know if you have been able to find any relief from this type of intense bone pain and what it was that helped you.

MsL

Perhaps hit up your pain doc for possible sympathetic block. If your pain is SMP, then a block may be very helpful.

Hi MsL,
I'm so sorry you are in this intense pain. I have had the stabbing intense pain, electrical jolts and jerks thru my body & brain. The only thing that completely took them away was high dose of neurotin and then later changed to lyrica. 3200 mg. a day of neurotin and 400 mg. of lyrica-not both at same time. the lyrica seems to help more with the pain. I was also on two anti-depressants for depression and nerve pain. I was on the high dose of neurotin for 4 years. Just a few months ago, I went slowly off the meds and just one 120mg. of cymbalta now. What has really lowered my pain level is sleeping a restorative 10 hrs. a night-300mg seroquel. When I started sleeping 10 hours every night, I was able to cut my lorazapam-anti-anxiety med from 2mg 3 times a day to 1 mg 3 times a day. An anti-anxiety med calms the sympathetic nervous system , thus lowers pain level. I also went from 6 5/500 mg vicodin to 3 5/500 a day. I'm also on two blood pressure meds. Because of the sleep, my pain level is drastically dropped. When I got the flu last month, I did have a bad flare and went back up on meds, but now am back down. I feel like I'm getting my life back, but still need to be on half amount of drugs. My Dr. just completed a 200 person trial on seroquel and the results were a high percentage of help on fibromyalgia and sleep. When it is published, I'll post it on the board. I've had RSD 14 years, now full body and internal. This has been a gift. I've been seeing this Dr. 5 years and feel I'm in a better place than I was a year ago. I follow a healthy high anti-oxidant diet. I am 61 now, mobile with exception of one hand partially paralyzed-wasn't diagnosed for 4 years and delay of treatment.
I did not have a recurrence of stabing pain when I went off the meds. I'm grateful of the progress. I have a very low immune system. The internal RSD is tough to deal with. For me, the bad part of being on high neurotin was the weight gain, which is now slowly coming off. The sleep -fibromyalgia med causes weight gain also.
My RSD quickly followed breast surgery and underarm benign tumor. Swelling and frozen shoulder.
I hope some of this is helpful. I've been thru different treatments. One that was really helpful was desensitization by my hand Dr. Also, even though I wasn't diagnosed with rsd, I immediately had physical therapy and massage therapy on my shoulder, then remission, then more therapy on other shoulder that became frozen. For me the above drugs and methods helped. I know we are all different, I have both hot and cold rsd. My Dr. of the last 5 years, is a neurologist, psychiatrist, and pharmacologist. He is envolved in trial studies-just built two clinics that have hbot in each of them. That is my next treatment. Take care,loretta soft hugs:grouphug:
p.s. I realize all meds have negative reactions, so a knowledgable Dr. is important and weigh the pros and cons. I was awake all night, not getting to sleep till 5-6 am, so the pain was unbelievable and quality of life was poor, not leaving the house for weeks and weeks. I'm grateful for the change.

I dont know if you able to do theropy,,although its painfull,,it produces fruit in the end.Pool theropy,aqua jogging ,,anything,,Some people cant,,and i dont know if this is your situation,,but even if you can do any type of reps of any exercise this is very beneficial,,Ive personal seen where many people who will not,,or wont because of the pain,or being lazy[this remark is not intended for you],,but we have to keep moving to keep the bone from atrophying and loosing muscle tone,,,,I know that oxy is a short term med,,,then after a while the pain pokes it head thru because the body gets used to the amount and you have to up the dose or stack something else,,good luck to you,,and I will pray for you,,,PM me if you want,,i was a certified trainer for years,,feel free to pick my bain,,,,,,bobber,,,,,,,,,,,,,,,rsd is a nasty disease,,but movement is a must,,i feels so sorry for the ones who are clawing up and wheel chair bound,,ive incausagia with nerve entrapment,,very agressive at a fast pace,,I pray,,and move,,,pray and move,,and alot of times between the meds or depression of my condition with the pain,,i dont feel like getting out of bed,,but we must,,but God will heal us,,,

Mslady--
I am so glad you posted this.
I am dealing with the exact same thing and its so frustrating. My current meds seem to only help with the allodynia and the sharp, pressing pain; but they are not touching with the "hot", stabbing, radiating pain.

My RSD/CRPS has gone internal, its not Sympathatically maintaned, so blocks won't do any good and since I stay pretty active (I have to climb 4 flights of stairs to get to my house) more excersise is not something that is appropriate for me.

So frustrating.......

((HUgs)))

L2L

Hi Dubious,

Very good thought, I think you are right!

I don't know why I didn't think of it myself. I had many many lumbar sympathetic blocks in the beginning of my diagnosis and I had good results from them overall. I stopped getting them when my doctor switched me to the lidocaine infusions. My foot has been going ice cold lately and the only way it seems that I can raise the internal temp is by dipping it in hot wax. LSB's used to warm my foot immediately.

I'll be getting a bone scan this coming week to check to see if everything is ok following last years screw removals. I still have 1 screw that they couldn't get out and that is where the pain is radiating from. It was too solidly wedged in with and they didn't want to fiddle with it. The ongoing saga of how I got screwed by an orthopedic surgeon.

Thanks a million, I feel like there is hope again.

MsL

Dear Lorreta,

You have been through so much. I'm happy for you that you found the right drug cocktail to help with your RSD pain. Mainly I have had cold RSD but lately it has been fluctuating between hot and cold too. I didn't sleep last night either. It's very hard to function and stay focused and positive on little sleep isn't it. I went to the emergency room today because this pain is not like any RSD pain I've ever experienced over the past 7 years. They couldn't do much for me. I had to drive myself so I didn't want to take any medicine while I was there. I'll try to get into see my pain doctor this week if it's possible. It's our Thanksgiving weekend here so he'll probably be booked solid on Tuesday, but I'll try.


Hi Bobber,

You are absolutely right about getting exercise and I try to do as much as I can. I use a therapy band to do some pilates type stretching and that seems to help as long as I don't push myself beyond my limits. I've been known to overdo it and flare my RSD up but I've gotten better at listening to what my body is telling me. Gotta keep it moving and keep it warm. It's a daily ritual but the darn stairs are getting harder and harder to go down each day. It's gotten too cold here and I don't want to go by a pool as I'm too sensitive to drafts right now.

Unfortunately I don't do well on the oxy much like most meds for RSD. It makes me feel sick so it's hard to stack. I keep it on hand for emergencies like this but I was I was surprised it didn't stop the attack of stabbing pain.

In the beginning I was scared to death of being sentenced to a wheelchair. I guess I still am in a way. It is a powerful motivator to keep moving isn't it. Don't forget to breath too. Keep the faith my friend it's what will get you through.

Hi L2L,

I'm sorry to here your rsd has spread internally. This really is a "B" isn't it.


Thank you all for your kind thoughts and consideration. :grouphug:

I would get an xray of that foot. There is a condition called
Charcot's foot...that happens to PNers, and diabetics.

When feeling in the foot becomes compromised small stress fractures can result and be very painful.

http://en.wikipedia.org/wiki/Neuropathic_arthropathy

Hi,
 

What I found works best for me is my Methadone. I also use Lidocaine patches. I usually slap one of them on but they take awhile to start helping so I take some Methadone. I don't take it all of the time now as I do have mine under control most of the time except when the weather changes or I overdo it.

The blocks do help. I have seen them work for people who have had RSD for years around my area. I use to belong to an RSD group and 2 of the women did good from the blocks, one got out of her wheelchair. A good Anesteologist is best for blocks in my book.

Lidocaine is being used in a lot of ways today to help people with the RSD pain, shots, pills, infusions, blocks,patches, before surgeries . Good stuff.

I do know what you are going through. Here lately my pain has been crazy due to the weather change. Our weather started changing the first of August. I had my heat on two times in August. I do have MS and my friend that has it started up with pain around the same time I did too. He didn't figure out it might be the weather until I mentioned it to him.

It is possible that you are dealing with other problems in the foot too as someone else said. That screw, arthritis, plantar fascius, PN. There are too many other things to mention and with RSD, it seems like other things come on.

With the Methadone, the dosage for me is low so I don't get any side effects from it. It's also around 40. a month for 90 pills.

Exercise too is important. I have a treadmill that I use often and therabands and weights that I use. It's important to keep moving.

Most of my problems are in my hands and arms and upper body. The RSD in my bottom half is not near as bad as what some are dealing with. I can only imagine what all of you go through trying to get around.

Feel better soon.

Ada

In case you haven't already done so, please make sure you don’t have something mechanically wrong with your foot. There are some types of conditions that are associated with RSD that can cause changes in the bones. You might have something going on in there other than the RSD pain. Maybe there is a crack in a bone, too. It would be good to get a look-see.

I have suddenly developed sharp pains that I attributed to RSD. After a few months, I saw my orthopedic surgeon. He is blaming a lot of the pain on the screw heads. (I have six long screws from a fusion surgery.) He recommends taking them out. I am hesitant about the trauma setting off a flare-up.

So, he gave me a prescription for a topical treatment developed for osteoarthritis pain, called Voltaren Gel. This is kind-of like putting on a Lidocaine patch. Whereas a patch is limited to a surface it can adhere to, the gel can go on any shape. It dries in about ½ hour and you can then put on your sock, slipper, whatever.

I will probably need to have the surgery someday, but this helps the pain in the meantime.

Mike

Hi all,

I do have osteoarthritis and osteoporosis in this foot so it could very well be a mechanical issue of some sort. It's not like me to go to emergency but the pain was rapidly firing every 10 seconds or so for over 24 hours. It feels like I have broken something as I have a horrible time with weight bearing especially when it's cold. It has calmed down somewhat today but it's still coming on strong even at the most unexpected moments.

Mrs D, I had an x ray yesterday but the emergency doctor didn't think there was anything significant, just sent me home. Fortunately he did order a bone scan and that should tell us if this is a mechanical problem or not. I'm to call tomorrow to get my appointment booked.

Mike, I waited 6 years to have my screws removed, scared about the possible worsening of my RSD too. Ultimately they just were working there way out on there own as they became loose causing more havoc making it much worse in the long run. I wished I had acted sooner because possibly they could gotten all of them out. There are ways to manage the potential RSD flare from this type of procedure. Give me a shout if you decide to go through with having them removed. Thanks for the tip on the Voltaren Gel, I'll ask my doctor about that when I see him.

Hi Ada, I don't think we can get lidocaine patches up here but I will ask about them too. I do get lidocaine infusions, had one last Tuesday but it's not helping this time around.

It was once recommended by a consult doctor that I could try methodone. He says he's had great success with it, basically that is the primary drug he he prescribes for pain management. I'll go there if I have to but I want to see what the results of the bone scan are before I get into trying any new drugs. I'm glad to hear it is helping you.

Thanks all for your and suggestions. We have such a great group here, I feel very blessed to have your support.

MsL

Hi
I wish you well on the bone scan,,I had one done,but all it showed was alot of hot spots thru out the body,,all my dr's looked at the scan and did nothing,,the pain med dr,wanted to send me to see a reheumatologist,,but my insurance said no,and i was kinda glad,,I thought it would be a wasted trip,,I have a lot of hot spots in my ankles and feet,heel area too,,i believe its the rsd,,,Trying a different set of meds may help ,or you may end at the same place later on,,,but everything is worth a try,,Im glad that your moving and exerciseing,,and my faith is that God will lift you up out of that chair,, 1st peter chapter 5,,,,,,,,,,,,keep us posted ,you are in my prayers,,,bobber

I have what you are feeling in both my shoulders & arm i'm on oxy but find it does nothing for that kind of pain i use Darocet for this that what the ART doctor said to use they are fing out some poeple bone pain that the oxy does't work also try to get nerv blocks and see if that helps when i have a bad bad i also will get a shot of Trodal and if that does't work i will get morphine and viseral sorry for the spelling guys hard to think having bad night

Hi MsL,
I have a consult next week with a Dr. to do a nerve block. My neurologist told me it should help with the pain in my feet. I was reading the posts and see you have had them in the past with good results. It may be a good idea to have them again. I don't have the deep bone pain in my feet just the intense burning. I am hoping the block helps if he decides I am a candidate.
I hope you find some relief.
hopeful

Nerve Blocks, New Topical Cream, RSD & Me
 

Hello all - Have had RSD since 2005, in my lower right leg with no transference or expansion, and as everyone suffering from this SOB disease, have had my ups and downs. I last posted in this forum after a horrible flareup last February. My truly excellent PM doc, Dr. Spagnoletti in Marlton, has been my partner is trying to give me back some semblance of my once busy and fast paced life.

I had my first lumbar sympathetic nerve block last March, which relieved the pain from my ankle to halfway up my shin. I went back for a 2nd block 5 weeks later and that took care of the pain in the rest of my shin. Shortly after, I started experiencing the strangest thrumming type of pain in both of my legs, which we fairly quickly tied to a herniated disc that I didn't even know I had. Two epidurals pretty much controlled that pain, along with a lower-dosage drug cocktail than I had previously been taking. Between the nerve blocks, the epis and the drugs (fentanyl patch 50mcg every 48 hrs, 15mg oxycodone plus 30s when I need them, SOMA for sleep when I need them), I've been pretty much controlled since last March. Until about 3 weeks ago.

That deep burning heaviness in the bone in my right shin started rearing its ugly head almost a month ago, and of course, at first I thought to just ignore it. Many of you know how this goes ... something works, and the pain is almost gone, controlled almost completely by pain meds, and there's that ever-optimistic part of my brain that dares to whisper "Maybe that's it, maybe we've got it, maybe my central nervous system has finally settled down and I'm on the road to full recovery." Alas, not so. But still, I tried to ignore it, until the burning got worse and the heaviness got heavier. We tried an epi because the thrumming pain came back with a vengeance 5 weeks ago, but not one iota of relief from that. So, on my monthly visit to Dr Spag, we decided I'd have Dr. Rosen (another incredibly sensitive and aware RSD doc in the Philly area) do another nerve block. I always get so scared before these treatments, not of the treatment itself, but that it won't work at all this time.

I've been out of work since last May, left a job where my boss was just a complete and total jerk. After the flare up I had in Feb 08, Dr Spag sent in family leave forms basically saying that RSD is a condition that typically doesn't allow the patient to forecast when the pain will be too bad to work, and they really didn't have any choice but to accept it. But the boss sure didn't like it, and took every opportunity to punish me for the time off, despite that my work was always done, etc. Finally, in May, it became clear I think to the big boss that I had gathered enough evidence to file an FMLA complaint, so they made me a good severance offer and I took it. After leaving the job, my stress levels went way down, and of course, so did the pain. I started an event planning business, and have had pretty good success, but it scares me to the core that the RSD will take this away from me too. I hate this disease, with a passion. It's not just the pain, as all of you here know. People who don't have it just can't understand. There are days, when I'm in flare-up, that I don't even have the energy to take a shower, let alone get dressed and put some make up on. I feel totally and completely depleted, and I can't string two intelligent and cogent thoughts together, let alone talk to a prospective client about planning the wedding of her dreams. And the specter that peeks around that corner is the very real possibility that I won't be able to make this business work, and I'll be back to trying to find - and keep - a full time corporate job. Truth be told, I'm really incredibly scared. Which leads to stress, which leads to not being able to get a good night's sleep for weeks on end, which leads to ... you guessed it, more pain, more brain-fuzziness, the whole RSD banana.

I do want to stress that, for those of you haven't tried a nerve block, it's definitely worth a try. The difference for me has been dramatic. I had my 3rd one today at 4, and for the first time in almost a month, am able to sit here and type this, keeping my thoughts centered and not having to keep scrolling up to see if I'm making sense. Right now, the pain is almost non-existent. The procedure is really simple, not painful (with the exception of minor discomfort at the injection site). As I said, definitely worth a try. Because I have a doc who listens to me, when I go in and say "It's bad" he immediately addresses it with meds or trigger point injections ... we have a conversation about what might be the best approach.

Early in my RSD diagnosis, I was on Lyrica. I'm glad to hear that it's working for some people, but it made me so sick, and did nothing for my pain. I got to the point on that drug that my critical thought process was completely destroyed. I couldn't drive into a gas station and figure out how to pull in so that the pump was on the same side as my gas tank. It was awful; I'll never go back there.

One other thing that I haven't seen in the posts I've looked at tonight that some of you may want to try is a topical cream that Dr Spag has been prescribing for a few months. I'd used topicals before with absolutely no effect (for instance, I have 2 boxes of lidocaine patches in my closet, that do nothing at all - NOTHING. Might as well put a wet paper towel on!). This new cream is called Glucosamine HCL/MSM VP-E5 10/10% 100GM. It's from a compounding pharmacy, Hill's, in Milford OH. A medium sized tube costs about $55. The doc faxes the compounding pharmacy a script, I call and provide my payment method and they send it via UPS. I was really skeptical, but this stuff REALLY works, even on the burning bone pain, unless I'm in an extreme flare up. I'd encourage RSD folks to give it a try, even if you've used topicals before that didn't work. Dr. Spag told me at my last visit that this pharm also has a morphine topical that he's seen pretty dramatic results with as well; the morphine doesn't absorb overmuch into the skin, apparently. If you'd like the address or phone # of the pharm, drop me an email.

So, that's my story. Sorry about the length, it's just been so long since I've shared anything with people who know what it's like, and once I started, I guess I couldn't stop ... til now ...

Thanks for listening!
:cool:

the same suggestion again: Zometa
 

Dear Mslday -

Recalling our dscussion a couple of weeks ago in your Fear and Funtionality thread, http://neurotalk.psychcentral.com/thread103593-4.html, I would once again endorse the use of Zometa as the ONLY effective treatment I have have for the previosly debilitating "deep, bone crushing pain" in my feet. (Please see my Post No. 35.) That said, I recognize fully that you had a different experience with Pamidromate. (Post No. 33, above). Nervertheless, as set forth in my post, the two are different drugs with different risk profiles. I would strongly urge you to discuss the relative merits of Zometa with your physician.

A link the the FDA approved U.S. prescribing information sheet for Zometa is included in my prior post: please note that it bears little resemblance to the risks of Pamidromate to which you had referred/linked. Once again, only your physician is qualified to speak on whether a severe reaction on one drug would preclude trying the other.

And for what it's worth, I found out yesterday that my insurance company's prior objections to the use of Zometa were being overridden, and that I had the green light to proceed with further treatments, subject of course, to getting a clean bill of health on my kidney functions.

Mike

Dear MsL,

I use Voltaren gel on my head and neck when I have severe head pain, especially later in the day and during the evening, or when the weather is cold, wet and rainy (like right now). I like it a lot and think it helps calm down the pain. It is fortunate for me that my hair is short!

Methadone was prescribed for me back in May when I was suffering from severe head pain and Percocet alone wasn't touching it. My initial dose was 5mg 3 times a day. It made a HUGE difference in my pain. I am currently dosed for up to 6 5mg Methadone a day if I need them. A pain doctor I saw in NYC told me that, in his opinion, Methadone is one of the very best drugs for RSD because it works on your NMDA receptors, or nerve pain.

Let us know how you are doing. Hopefully your weather is better than what we are forecast to have for the next 4 days in the NE USA.

Good luck and take care, Sandy