Best meds for my pain

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holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 8/20/2011 8:22 AM (GMT -6)   
Well I am hating asking this question because I don't want to be referred to as a drug seeker, but here is my back ground first...

Four-and-a-half years ago I was involved in what I thought was to be a minor car accident. Basically I developed a migraine along with neck and I guess shoulder pain that pretty much lasted a year. You named the therapy, I probably tried it. Physical therapy, chiropractor, multiple types of injections, massage, and medications. I was immediately put on Topamax, then later Cybalta. I took muscle relaxers and hydrocodone as needed. Eventually I was also put on Ultram. My doctor believed I had fibromyalgia, but I never had any tests.

I eventually healed,but never completely. Every now and then I would get the neck and shoulder pain, but only a few times a month. It was something I could handle. I kept the prescription for the muscle relaxer and downgraded to a prescription for tylenol with codeine.

Back in June I started getting migraines so my Primary Care put me back on Topamax.The migraines have tapered off, but my neck and shoulder pain is back. Well it's going on two-and-a-half months and I am back to nonstop pain. It is not as severe as before, but it is definitely bad. The bulk of my pain is in my neck, and I have constant tension in my shoulders, thus causing tension headaches. Massage helps, but only for a day or two, then I am back to the constant tension. I feel pain almost immediately upon laying down, and even sitting down on my couch irritates my neck and causes pain.

I have an appointment to see a rheumatologist, but I can't get in until October. I have a follow-up with my Primary Care on Monday, so I am wondering if there are any good meds that might be worth trying to help me with the type of pain I am experiencing. I work full time, so I don't want anything that will impair my thinking, but I really want, scratch that, I really need a break from this pain. So anything y'all can suggest I would really appreciate. Perhaps something different than I have already tried.

I have been more fortunate this time around and able to stay away from depression and keep a positive attitude, but I am not going to lie, this sucks being in constant pain.

straydog
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Date Joined Feb 2003
Total Posts : 16273
   Posted 8/20/2011 10:54 AM (GMT -6)   
Hi Holmes and welcome to Healing Wells chronic pain forum. I am glad that you found us but sorry that you have to be here.

Migraines are horrible I have them so i know that type of pain and then the neck and shoulder pain afterwards can be something else. May I ask first why you were referred to a rheumatologist? Is there something else going on besides this?

It really is difficult to answer your question on pain medications. There are just too many out there to list, people metabolize medication differently so what may help me, may do nothing for you. Since you are seeing your PCP on Monday, you should let him know what medication you took in the past and how well they either worked or did not work and let him be the judge as to what he may think will give you some relief. If he prescribes something that does not work after a few days then contact his office and let them know so he can try something else. Its always best to let a dr suggest a medication than the patient suggest one. Sometime asking for medications by name can send a red flag up with a dr.and thats the last thing you need.

Are you on any type of muscle relaxant? It sounds like you may need one to help loosen those muscles up in your neck and shoulders. Something that helps me in this situation is to make myself a hot pack by wetting a hand towel and nuking it in the microwave for a few seconds. You really have o be careful when doing this they can get too hot. I find moist heat to be better than dry heat.

Anyway, I wanted to pop on here and tell you welcome aboard. I do hope all goes well when you see your dr on Monday. Please keep us posted on how you are coming along. In the meantime, if you by chance have any Ibuprophen handy at the house, you may want to try that over the weekend. It can work not too bad if you have some inflammation going on. I say this because I broke my arm and was in a lot of pain, the opioid I take had absolutely no effect on the pain. A friend who is a nurse brought me Ibuprophen and it worked great. Never took another pain pill for that arm again, lol.
Moderator Chronic Pain Forum

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 8/20/2011 11:16 AM (GMT -6)   
Thank you for the response. As I said, I hate even asking the question. I don't like taking medicine at all. I would much rather find out what is wrong and fix it, but since I don't have that option at this time, I am just wanting something.

I only started off with migraines, but those have tapered off and now (with the help of Topamax daily and Relpax when needed); it is just tension headaches with muscle and nerve type pain in the neck and shoulders. I pretty much have constant tension in my shoulders and my neck always hurts just by touching it. The way I can describe the shoulders is like those daredevils that put hooks in their skin and just hang, I feel like that, pure exhaustion from hanging from my shoulders all day. With all this tension it causes headaches. Some days my shoulders are fine, but I have this pain deep inside my head. I am not sure what that pain is really.

Massage seems to help, but here's the thing. I had to have two of them this week. By the second one, I felt great. I mean, I had the first day with no pain in a long time. But I sat on my couch, and the way it pushes my head forward a little bit irritated my neck and I was in immediate pain. even laying down sometimes causes me instant pain in the neck, no matter what pillow I use, or even if I don't use a pillow at all. So I am starting to think there is something going on with my neck. When it all started over four years ago, whiplash and disk degenerative disease is all they could find, but all the docs I saw did not think that would cause me such pain, so really, no one every really figured it out.

I actually decided to see a rheumy because of all the muscle and nerve pain I am experiencing in my neck and shoulders. And since my Primary care thought (four years ago) that I have fibromyalgia, I thought it was a good idea to see one. I've seen a neurologist and pain management doc in the past and they gave up on me. I am really hoping this type of doc can find some answers.

My PCP knows everything I've been on as she is the one who has prescribed me stuff in the past. It's just that I have a hunch she will want me to go back on the same things, but none of that worked, so I was hoping to see what worked for others to see if maybe it will work for me. I get what you are saying though. I will definitely be discussing what I have dealt with the past couple of months and we can figure out what to take. She knows my history so maybe she can think of something different. I guess I worry too because having gone through this before and having so many different doctors give up on me, I worry about that happening again.

I do take flexeril (muscle relaxer) a couple times a week, but I don't feel it really helps me relax my muscles, but it does help me sleep, so that is good. I definitely do the moist heat often, and I have this ****su massage pillow I use a lot at work that feels great, but is only temporary. I just don't get how my shoulders and neck can be stiff and sore 24/7.

As far as pain meds, I rotate between ibuprofen, Tylenol arthritis, Tylenol with codeine, and Vicodin. Honestly though, because nine times out of ten nothing works, most days I don't even take anything. I really only do if it is more severe pain, like a 6 or 7 out of 10 on the pain scale.

Thank you for listening, I know I go on and on. I am so thankful for this site!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16273
   Posted 8/20/2011 11:36 AM (GMT -6)   
I hear what you are saying. I went for about 15 years with horrible migraines, my neurologist would put me in the hospital for 24 hours and give me a medication that was given by IV only and it was for migraines only too. I cannot remember the name. if it was a true migraine when you woke up it would be gone and it was. Sad but true the neck pain and shoulder pain no one could ever get it under control. I went thru a zillion different treatments too.

The prior PM dr I saw did Radio Frequency Ablations of the nerve endings and that took care of that horrible pain. Granted I have herniated disc at C5/C6 & C6/C7. I refused surgery back then. Now I am prone to incidents aggravating things so I really have to watch it.

I took Flexeril years ago and all it did for me was make me throw up. I have tried Zanaflex in the past and it worked real well for spasms. I am currently on Baclofen for muscle spasms and its a wonder drug for me right now. Yes, I have neck & shoulder issues again, from lifting two different times. My recent CT of my neck showed a neck full of arthritis and spurring which is new. The arthritis before was not as prominent as it was before and yes I am older too, lol.

Problems you are going to run into on pain meds is they may impair you and that will be a problem potentially if you are working. I can only tell you that when pain starts such as yours has this time around, if you don't get a handle on the pain and get the pain cycle broken then you may well end up with chronic pain issues. For many this is how the CP starts. When a person does a hit and miss job trying to get their pain levels down if they are not consistent with their pain medication all they are doing is slowing it down for the moment. Its truly a must in breaking that pain cycle, pretty much like when a migraine hits.

Your dr should know what it the current pain medications she is prescribing to her patients and what is helping most and what is not. A lot of people here are on Ultram, but they have now classified it I believe as a narcotic.

I hope you can get help come Monday.
Moderator Chronic Pain Forum

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 8/20/2011 11:59 AM (GMT -6)   
I had a trip to the ER once and I don't remember what they called it that they put in the IV, but the prescription for it was migranol (sp?) and it is taken as an inhaler. I am not sure if that is what you are referring to, as I know there are different things that the ER will try. The migranol didn't help. When I get a true migraine, the Relpax helps, but the problem is I have to sometimes take two to get rid of it completely.

I took the Zanaflex before and I don't remember that working much either. Back then the bulk of my pain was the headaches . It was so hard because the pain was so bad it was hard to pinpoint exactly where I hurt. Not that it is less severe, it is easier to tell where it hurts. And it could just be totally different than before. I am curious to maybe get more x-rays and see what, if anything, has changed.

I was on Ultram for a good while, but like I said, it didn't help. But then again, if my issues are different than before, maybe it is worth trying again. I guess I will just see what she thinks. I might have to look into that Baclofen if it helps. That is my biggest thing is I cannot seem to relax, ever. So my shoulders are constantly stiff. The flexeril at best helps me sleep through the night. I don't feel my muscles are relaxed.

What is funny is going to the massage place this week, she actually massaged the front of my neck, and oh my goodness it hurt so bad. I have never had that part worked on me, and she said that is where the bulk of the stress is. I would have never known. She taught me some stretches to do and I am constantly massaging the area myself.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16273
   Posted 8/20/2011 1:03 PM (GMT -6)   
I have a really goofy system, I do not tolerate medication well at all, either allergic to them, or something in them or the side effects are incredible. There is a common ingredient in scripted migraine meds that I am allergic to. It is in everyone of the meds so, those are out for me. My son does Imitrix nasal spray and that works for him. He started having severe migraines when he was 8 yrs old. Both of my kids inherited them from me.

The IV medication he shortened to 3 letters because the actual name was a mile long and no one could pronounce it correctly, lol. I believe it is available now but has to be mixed by a pharmacist that knows compounds.

Interesting what you said about the massage therapist massaging the front of your throat. My old boss introduced me to an older lady that was pretty much retired from doing massage therapy. She started doing it out of her home because she had some patients that would not let anyone else touch them. I understand now why they would not go else where. I started going to her for migraines. She did not just do typical massage therapy, she also used reflexology as well say combined. She knew places on my feet to work on to get a migraine stopped, neck pain and back pain too. She could actually work on my feet and get muscles spasms stopped in my neck & back. The first time I went and she started in on my feet I was squealing in pain because all of a sudden this little old lady is touching these places on my feet that are very sore and tender to touch and I had no clue, lol. She was truly gifted with her hands.

If you have tried Zanaflex then I would perhaps talk about trying Baclofen, I am on 10mg, 5mg did nothing for me. It is widely used now and pretty effective for most. it is used a lot by people with MS. Yes, some how you have got to learn how to get those muscles relaxed, otherwise tense muscles are a trigger.

You know there is a chance the old accident may have been what started this. It can happen that way at least be the beginning of it. I have had a couple of car accident and each time my neck was involved, never had neck pain until the first wreck.

I ended up doing acupuncture when all the things failed to get the pain under control. I wish I had done it in the beginning, it would have saved me a lot of grief and pain.

Again, I hope you can get some answers and help on Monday. You may well need to get some of other type of xrays done if its been that long. I can tell you now that typical plain film xrays will not show much of anything. Those xrays will show fractures and breaks and thing like that.
Moderator Chronic Pain Forum

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 8/20/2011 10:16 PM (GMT -6)   
Hi holmes Welcome to our chronic pain family. I'm sorry that you're having such bad paiin. I hope you can get some help from your pcp on Monday. Take care. I hope your pain is better tonight.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Hello~Kitty
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Date Joined Jun 2005
Total Posts : 610
   Posted 8/20/2011 10:47 PM (GMT -6)   
D.H.E. 45 and stadol are the two migraine medication that come as an inhaler type thing for migraines, I know stadol is a nasal spray, not sure about the other. They both made me very ill and didn't work for the migraines. Have you tried keeping a journal to see if anything your doing or taking might be causing the migraines? I know stress is a big trigger, so maybe try some relaxation breathing techniques or something like that might help. Has the doctor ordered an MRI lately to see if anything might need surgery or some type of treatment?? I would ask for one to see if maybe things are getting worse then before, maybe you damaged it more without remembering?? Its easy to cause more damage to parts of our body thats already damaged. Its hard to know what kind of medication might help without knowing what your cause of pain is, just don't give up if the first or twentieth treatment regimen doesn't work!!
DX-Pancreatic Divisum, Rheumatoid Arthritis, Fibromyalgia, Myofascial Syndrome, Migraines, Allergies W/Asthma, Depression W/Anxiety/Panic disorder, Lower back Disc issues

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 8/21/2011 1:40 PM (GMT -6)   
I am not sure about the migraines, other than I know I get menstrual migraines. But lately I've been getting them more often and without reason, at least from what I can tell. they are more under control with the Topamax, so that is good. It's just the neck and shoulder tension and pain as well as tension headaches I am suffering with on a daily basis.

I haven't and an MRI since everything started over four years ago. Same with CT scans and X-rays. The MRI and CT scans were just of my brain and everything was fine. The X-rays were of my neck, and there were small things here and there, but nothing the doctors felt that would be causing such pain. I am curious to know if these doctors will want new scans now that I am back to being in pain again.

It was so depressing when I dealt with this before. about a full year of nonstop pain, with so much different medication and treatments, only to have every doctor give up on me. I don't know what ended up happening, but I just sort of stopped hurting. The pain didn't stop completely. But I went from nonstop pain to pain a couple times a month. So I am just wondering if without knowing it I re-injured myself and that is why I am hurting again. As you said, it's easy to cause more damage to parts of our body that's already damaged.

I will keep y'all posted on what my PCP says tomorrow.

Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 8/21/2011 3:55 PM (GMT -6)   
Hi H,

I didn't have time to read every line in the thread, so please forgive me if I am duplicating the info you are given. My best friend has similar pain (but no migraines) and I also have much tension pain. I have found that biofreeze is the absolute most wonderful thing for helping with the tension pain. My step-daughter gets the tension headaches (which lead to migraine) from tensing her shoulders and neck up and she finds almost immediate relief from using Volteren Gel. It is prescription and somewhat expensive on my co-pay, but does wonders. I just ordered a gallon of Biofreeze from a medical supply company and it ran about $115.00 including shipping. You may be able to pick some up at a physical therapy or massage therapy office or may even be able to get a sample or two from them or a chiropractor's office. The Volteren worked for me, but I found that I was allergic to it (like almost everything else). It took a little longer to come out, but I'm allergic to all NSAIDS (except aspirin) and that one did the same as the others for me.

I hope you find the answers you are looking for when you see your physician. If you can get by without using major prescription meds, I'm sure you will feel better in the long run. Don't get me wrong, I take them and I understand the need for the major meds, but the biofreeze is the key to stopping my back pain from overtaking me when it is time for bed and my muscles need to relax. Again, I'm allergic to the oral muscle relaxers that I have tried and don't like to add new meds to the mix when something else will do. They sell an OTC product by the makers of biofreeze, but I bought it at CVS for about $16.00 for 4 oz and it doesn't help anywhere near as much as the real thing.

Best of luck!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, Pre-glaucomic, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet & much more.....

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 8/21/2011 5:24 PM (GMT -6)   
Yes, I am familiar with Biofreeze as I bought that when this first started. I have totally forgot about it and haven't thought to use it this time around.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 8/21/2011 10:17 PM (GMT -6)   
Hi H -

Glad you found the CP section of HW.... but I'm sorry you are suffering. My name is Tina and I suffer from several health issues and several pain issues, including migraines. Please let us know what your PCP says tomorrow.

For me, I've been through just about every med out there for my headaches.... from all the "typical" migraine meds.... to topamax.... to muscle relaxers... on and on. For me, I have a certain "protocal" I use now. When I feel the very start of a headache, I take two Excedrin. I don't drink any caffeine, but I think the caffeine in the Excedrin does help. Sometimes, this is enough to ward off a bad headache.

From there, I have two levels of breakthrough meds. Oxycontin (used to be Dilaudid, but I built a huge tolerance to it - so I recently switched things up). If the oxycontin doesn't help within 2 doses, I use the oral Fentanyl (the fentanyl lollipop). The nice thing about using it w/ a migraine is it comes on quickly, gets rid of the migraine and the med leaves pretty quickly.

I also use a muscle relaxer that helps, too.

That is what works for me - but this was after years of trial and error. My meds are also ULTRA expensive and many insurances will balk at paying for them - especially the oral fentanyl.

Please let us know what your doc says.... and, again, I'm glad you are here.
Take care of yourself. --Tina

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 8/21/2011 10:29 PM (GMT -6)   
Momto8kids said...
Hi H -

Glad you found the CP section of HW.... but I'm sorry you are suffering. My name is Tina and I suffer from several health issues and several pain issues, including migraines. Please let us know what your PCP says tomorrow.

For me, I've been through just about every med out there for my headaches.... from all the "typical" migraine meds.... to topamax.... to muscle relaxers... on and on. For me, I have a certain "protocal" I use now. When I feel the very start of a headache, I take two Excedrin. I don't drink any caffeine, but I think the caffeine in the Excedrin does help. Sometimes, this is enough to ward off a bad headache.

From there, I have two levels of breakthrough meds. Oxycontin (used to be Dilaudid, but I built a huge tolerance to it - so I recently switched things up). If the oxycontin doesn't help within 2 doses, I use the oral Fentanyl (the fentanyl lollipop). The nice thing about using it w/ a migraine is it comes on quickly, gets rid of the migraine and the med leaves pretty quickly.

I also use a muscle relaxer that helps, too.

That is what works for me - but this was after years of trial and error. My meds are also ULTRA expensive and many insurances will balk at paying for them - especially the oral fentanyl.

Please let us know what your doc says.... and, again, I'm glad you are here.
Take care of yourself. --Tina



I'm sorry to intrude on this conversation but upon reading the last post I wanted to ask this question to Momto8kids...You mention you moved to Oxycontin from Dilaudid because you built up a huge tolerances to it. What dosage of Dilaudid did you stop on? and what dosage of Oxycontin are you on now? Also I must ask how do the lollipops work for you, in my area no one makes them so I instead just had to use the patches until after 150mcg/hr did not work at all we went onto other stuff. I always thought fentynal would be best to work by oral as it would work the fastest as I've also had fentynal shots but they were just as worthless as the patches. Anyway thank you for your time.
I currently take: Cimzia 2-200mg injections, Zolpidem 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, & Dysautonomia

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 8/22/2011 1:09 AM (GMT -6)   
Hi LordWood,

Nice to meet you. I've been on narcotics for so long, that my doctor will often do a "rotation" of meds after a year or two on a certain medication. For me, a medication will work great for awhile - and then it's like taking water for me.

** Side note - I know not all doctors believe in this "tolerance" build-up thing... and that all opiods are comparable. This is the exact opposite of my belief and experience, though. Once I switch to a new med, it works great - until I eventually need to do another rotation. Enough said.... but I've had great experience w/ this.

Anyway, back to your question! Re: Dilaudid. IV Dilaudid still works well for me. I was just hospitalized and it still worked well. But the oral did not. I was taking 8mg, ever 4 hours. Now, I'm taking Oxycontin 15mg, every 4 hours. It's not working "great" - but better than the Dilaudid. I'm sure I'll end up back on the dilaudid eventually.... especially since I'm probably heading towards an intrathecal pain pump.

Re: the oral Fentanyl (I use the "generic" brand, but the brand-name is Actiq or Fentora). I use the lollipops. I, too, have used the fentanyl patches, at 150mcgs+. But had to discontinue for various reasons.

Not many doctors will prescribe the oral Fentanyl. It is HUGELY expensive - meaning thousands of dollars each month - upwards of $4000 per month. If your doctor will prescribe it, many insurances will balk at paying for it.

I'm not trying to be negative - just trying to present the reality of the medication. This was an "end of the road" medication for me, too. I had tried EVERYTHING - in every dose, every combo, etc etc. And we had to fight our insurance to pay for it.

In the end, though, it's changed my quality of life. I can be barely able to function due to a migraine or my back - and within 10 to 15 minutes, at least be functional. I have no side effects from it.... other than it did cause me to need massive dental work, before I switched to a new kind that doesn't contain as much sugar.

If you have any other questions - feel free to ask. I wish you luck in finding the right thing for you. Oh... I just read your signature line, too. I've never seen someone else here have dysautonomia. E-mail me if you want to talk more about it. I was diagnosed a few years back.

Take good care.... --Tina

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 8/22/2011 1:44 AM (GMT -6)   
Nice to meet you as well Momto8kids,

I as well have been on narcotics for years and been on just about all drugs imaginable. Sadly I don't get the option of rotation as cruelly most medications simply don't work or I'm allergic to them. Trust me any doctor trying to say that someone can't have a tolerance to meds is simply lying to themselves, I've proved this to my doctors as I went cold turkey from being on Oxycontin 80mg x4 daily with methadone added to that and had no withdrawal symptoms at all.
 
While on the methadone I do admit the little side effect of my depression getting worse but that was simply from being disappointed two of the highest meds were doing nothing for my pain. You mentioned Fentora that is one med we were wanting to try (not the lollipops but the pill form that was full release right, but my insurance will not cover it.
 
They feel it would not help since the patches and shots did not work. This Dilaudid I'm on now is simply so they can say there doing something. I've had the IV Dilaudid as well and went up to and 8mg bolus but after that didn't work the hospital refused to go any higher lol cowards. What sucks is I have a neurological disorder called RSD that literally makes medications completely worthless against my pain.
 
I've had nerve blocks, intense physical therapies, lidocaine infusions, epidurals into the spine to put higher meds in that way to no avail, spinal cord simulator which just made stuff worse. Even a bolus of ketamine, there currently trying to find a doctor covered by my insurance to do a ketamine infusion but insurances don't care about the patients lol so its taking forever.
 
Anyway I was just curious of your switch especially going from Dilaudid to Oxycontin but I'm glad you can keep rotating and that you have a good doctor with you backing you up. Glad your able to get the fentora as well and live life. Keep sticking it to the pain for all of us!!
 
 
    Attention Lordwood! A friendly request: Edited for easier reading:
 Would you as so kind to Split up you're post into smaller paragraphs, so that members with poor eyesight and tracking problems can read them easier. I have had several emails asking that this be brought to your attention, and I edited one of your post already for this. This same request was made on the Crohn's forum by a moderator there as well.
 
 We value your comments, and insight, and I know you have put quite a bit of effort into your replies. I think your replies and or post would be best served by splitting up your paragraphs into say..5 to 7 lines.
 
While it is not a forum requirement, it would be greatly appreciated by the membership. Thanks SE wink

Post Edited By Moderator (Screaming Eagle) : 8/22/2011 9:26:11 AM (GMT-6)


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 8/22/2011 10:25 AM (GMT -6)   
Wow, I never logged off last night.... it was late into the night and I was delirious. tongue

Anyway, one clarification. I wrote I am on 15mg oxycontin.... I'm on the instant release - so I guess that would be oxycodone. Ahhhh. Too many drugs; too many names :)

I, too, have a really weird system. I'll write more in the e-mail. But I, too, have been as high as 480mg of morphine a day w/ breakthrough meds..... I've been on a combo of morphine and oxycontin (yes, oxycontin this time! lol) - high doses of both. In the hospital - I've had 8mg of IV dilaudid shot into me numerous times (like every 30 minutes, when I was withering in pain). The nurses said they've never in 30 years given that much meds. I could go on and on.

Just to clarify, too, although I have been on Fentora - I'm on the lollipop as the Fentora just didn't last as long the Actiq.

I've got tons more to say (what's new); but I'll save it for e-mail. I wish you every success in finding the right med for you. Let me just say that it took me almost 6 years to get my meds right. I don't know how long you've been at this - but I was, at one time, so desperate trying to find the "right" meds. Now, I'm finally stable. I still have a daily pain level of 6 to 7 (on a regular basis) - and up to a 8 or 9, before my breakthrough meds. But this is so much better than a daily "8".

So I wish you every bit of luck; I honestly do. Keep posting and let others support you.

--Tina

straydog
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Date Joined Feb 2003
Total Posts : 16273
   Posted 8/22/2011 12:13 PM (GMT -6)   
Lordwood hello and welcome to the chronic pain forum. I noticed your dx being RSD and you have all my sympathies. It is such a wicked disease and very little effective treatment for it after all of these years. I remember when it first appeared on the horizon and no one had a clue what it was so the insurance companies would not cover any treatment for it for a long time. The only drs that were dxing it back then were PM type drs and they had no clue what they were doing for a long time.

You mentioned a bolus, so I am going to assume that you have a pain pump? You also said the drs were trying to get you approved for Ketamine infusion so I assume you are not in the states. One of our members here at the CP forum has RSD and she just had Ketamine infusions and no, she does not live in the states. She does have a pain pump that has Baclofen in it for the spasms. If you will use the search feature here at the forum and type in Ketamine infusion I am sure her info will pop up for you.

You are absolutely correct when you say the traditional pain medications have no effect on this disease. They do not work on pretty much any type of nerve related pain.

Anyway, I wanted to pop on and say hello and tell you about Laura, the member on here with RSD.
Moderator Chronic Pain Forum

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 8/22/2011 2:35 PM (GMT -6)   
straydog nice to meet you and thank you for letting me know about Laura. Your very correct in the beginning it was basically like getting hit by a baseball bat because my doctors didn't know what it was and I knew nothing at the time either. Insurances still love to be jerks and not cover treatments.

To answer your question about the bolus of ketamine, no I am not out of the states I am in PA. I was in getting a spinal cord simulator when my RSD flipped out my blood pressure sky rocketed and I could not breathe and my pain was off the charts so after giving me 5 high dose shots of fentynal and it not working they gave me a bolus of ketamine. The ketamine did calm my muscles but my pain was to outta control for it to deal with. That was an interesting day as I scared the entire team even the guy there from the company that made the spinal cord simulator. That was very rare to get that bolus of ketamine.

When I mention a bolus, a bolus is a amount of a medication say IV dilaudid or even the ketmine that is in a syringe and then put in through the IV all at once fast. No I do not have a pump as after they did a epidermal on me and put higher end meds in through that and it didn't work they ruled that a pump would not help me at all.

I was on baclofen 20mg 4x daily for along time till I just felt it was worthless and took myself off it. The ketmaine infusion I am talking about is done in the states.
I currently take: Cimzia 2-200mg injections, Zolpidem 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 8/22/2011 3:00 PM (GMT -6)   
Hi LordWood. I'm in Australia, where the low-dose ketamine infusion is much more commonly performed than in the US... Most PM doctors have some experience wit it here, meaning that it's available to most patients with CRPS severe enough to warrant it. I've have four infusions, so if you've any questions at all just open up a new question and ask away.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 8/22/2011 4:26 PM (GMT -6)   
Hello Holmesla
Welcome to HW and our chronic pain forum. You will enjoy being a part of this forum. The members are very caring and understanding and have a wealth of information.
Sorry to hear about your migraines. I can certainly feel for you. I suffer from constant, severe, temporal headahes. Over the last eleven yrs i have tried everything possible and no relief has come for me. It has been quite a struggle. I sure hope that you find something that will help you.
Please keep us posted.
 
Take care
Suzane

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 8/23/2011 6:59 AM (GMT -6)   
Funny story that some of you may be able to relate. I am on Topamax, better known as Dopamax...well I wrote on my calendar at work that my doctor appoint was yesterday (Monday), but I had a feeling it was today (Tuesday). I know my doctor works the late shift on Tuesdays. So I just had the feeling I had my days wrong plus I didn't get the reminder call I usually get, but I just didn't think to call to confirm myself. I just showed up and the second I got there I was thinking to myself, what am I doing here? And sure enough, they told me my appointment was on Tuesday. Topamax just makes me not think straight. I am one of the most organized people you could meet. Always on time and all, but this medicine just messes me up. And the fact that I am not sleeping adds into that I'm sure. I check the calendar on my phone and my daily planner, and it was all correct. I feel like such a dummy. I know, honest mistake, but I never make these kinds of mistakes.

So my doctor's appointment is today...so we will see today what she has to say.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16273
   Posted 8/23/2011 8:53 AM (GMT -6)   
Hey Holmes, I think we can all say been there and done that, lol. But you are so right, it really does make you feel like a dummy when you show up like that and realize you are there on the wrong day.

I do hope the appt goes well.
Moderator Chronic Pain Forum

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 8/24/2011 5:24 AM (GMT -6)   
It amazes me all of the different types of meds there that can be used to treat chronic pain.

I went to the doctor last night, and she is still set on thinking I have fibromyalgia. But she is thinking I should NOT go to the rheumatologist because they don't like to treat those types of patients. I was under the impression that they were the ones that specialized in fibromyalgia. Am I wrong? Either way, I figured they can run the proper tests and really maybe get down to the bottom of my pains, fibro or not. And refer me to the right place if necessary.

She kept me on the Topamax at the 50mg dosage and prescribed me nortriptyline for the fibro-like pains and sleeplessness I am going through. I am sure it takes a few days to kick in considering I still woke up at 3 am and in pain, just like I seem to do every day.

I am still going to see the rheumatologist despite what she was saying. I am not going to "give up" that easy in finding answers. I am not entirely convinced I have fibro because my pain is centered around my head, neck, and shoulders.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16273
   Posted 8/24/2011 9:18 AM (GMT -6)   
You are correct about who treats and diagnoses Fibro in people, its a rheumatologist. Boy, what is this dr thinking. There are no tests to diagnose Fibro either. its a matter of testing different pressure point on your body. You really need to check out the Fibro forum here at Healing Well, those folks can give you a ton of info on how to get a proper dx.

Fibro can be mild for some people or it can be debilitating for others. Also, if you will do a google search on Fibro and pick a good reputable site you can read all about it and learn a lot which I do suggest you do. The more you are educated about it the better off you will be.

The people with Fibro take medications that are for nerve pain like Lyrica, Neurotin and Cymbalta. The standard pain medications have little to no effect on nerve pain.

Let us know what you find out after doing a little research.
Moderator Chronic Pain Forum

holmesla
Regular Member


Date Joined Jan 2007
Total Posts : 196
   Posted 8/24/2011 9:47 AM (GMT -6)   
Yea, I am not sure what she was thinking. She read a new study on it or something. I have no idea. I really like her, but sometimes I question her. Earlier in the year I was sure I had gallstones and I wanted an ultrasound. She was pretty sure I didn't, but she hesitantly set me up for an ultrasound, and guess what, I had gallstones.

I have done some research on fibromyalgia, but I am just not completely sure that is what I have. Just because it seems the standard is widespread pain. Mine is just so straightforward, my neck and shoulders along with migraines and tension headaches. I know it's possible. At the same time, I've read that whiplash and other neck trauma can attribute to fibromyalgia, so it really gets me thinking. I've also read that it can be hereditary and I know my mother has it. She has a lot more symptoms than I do even.

I will see the rheumatologist and see what he says. I will continue to research and do what I can to try and avoid pain. Right now what I really need is some sleep. This only getting a few hours of sleep is giving me migraines and making it awfully hard to concentrate at work.
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