How much pain should we endure?

[Heather3418]

When it comes to the pain associated with MS, how do you guage your pain level on medication - as an acceptable level?  I have been diagnosed with MS for a long, long time.  I have had leg pain, since my first attack; probably coming from the lesion in my thoracic spine.  (I'm guessing!)

I thought doctor's were doing everything they could to try and control my pain.  I have been on all the medications for "nerve pain," without much success.  I take 40 mgs. of Baclofen every day.  I have tried all the anti-Parkinson drugs, with side-effects that I didn't want to live with.  I have tried Lyicia.  Uggghhh, is all I can say about that one.

I have cautiously used Opiates most of the last 10 years.  With some success.  I realize that none of us can totally be relieved of our pain, short of unconsciousness.  I'm on board with that.  How much pain are you willing to endure daily, without asking for more help of some sort?  You know doctors, most are afraid their patients will become addicted.  I have not shown any such propensity, in all the years I have been taking pain medication.  I never ask for a larger dose and I never use up my medication in the allotted time.  I never take more than is prescribed.  My doctor totally trusts me.

Despite pain medication, I am left with daily, chronic pain.  My leg muscles are so tired and achy at the end of the day, due to spasms, that I feel like I have run a marathon. I have endured, all that I can endure.  I live each day in uncontrolled agony.  I am only 54 years old.  Unless they come up with a cure and reversal of Multiple Sclerosis, I do see the rest of my life experiencing pain. I have told my doctor that I do not feel that my pain is well controlled.  I have even been to a Pain Management Center, that only offered me Medthadone, which I refused.

When do we say that enough is enough and ask for better pain control?  I'm not looking to get high and spend my life in a drug haze.  I am looking for a better quality of life.  One in which I can contribute, but without enduring so much pain in silence.  How do we know what is an acceptable level of pain?  What is your opinion and how would you approach such a question with your doctor?  I'm ready to say "Uncle."  I hurt...

Any of your thoughts on pain control, would be most welcome.  

Best Wishes and Many Blessings,
Heather  (Earth Mother)

[Quixotic1]

Please understand that, when you are in pain you can't help but think about the pain, and the meds and worry that the pain won't or can't be relieved!  That is not only normal, it is expected!  When the meds do not relieve enough of the pain we think about what might relieve it.  This precoccupation with our suffering robs us of the quality of life.  Our society is WRONG for making us feel bad about taking meds for pain.  What arrogant, judgmental nonsnese!

Only a tiny percentage of those who are genetically predisposed to addiction become addicts.  Everyone should know this!  What we are discussing here is not (NOT) addiction, it is suffering and inadequate pain relief.  The AMA and human rights organizations have stated unequivocally that humans have a right to palliative (pain relieving) treatment.

Heather, I just ache inside when I think of your daily, agonizing pain and then hear how sparingly you use your meds.  Methadone is not the only next possibility.  I do hope you can find someone or a pain clinic who will use some of the emerging technologies to help bring you relief.

Humming - I know I have spoken to you before about "bilateral" TN.  It almost invariably occurs just in MS.  More and more, when we hear that the diagnosis of MS was "taken away."  it was discarded in error.

It seems like I am just making people feel worse.  That was not my intention, so I will leave this.  The misunderstanding about dependence vs. addiction is too great and there is tto much emotion surrounding it.

Quix

[humming4u]

hi,i haven't posted much. but this post just said it all, and ment a whole lot to me.
heather,I too, suffer from terrible face pain , and have for almost three years.I am a limbolander, but did have a possiable/proable Ms dx for awhile, and then they changed it to just my fibro, which i'd had for 12 years and did well with.I take two different pain meds, double starting doses 3-4 times a day.i am a constant thinker of my pain and meds and i hate it, and sometimes hate me for feeling so weak.
quix helped me find a possiable dx of atypical, bilateral, tigeminal neralgia, but my current doc won't even talk to me about it yet.I really like her as shes been so very kind
to me.but my dearest friends are encouraging me to seek help elsewhere now, as they hurt when they see me hurt,God Bless them ,as they have been to me.
i'm very sad tonight as my mother in heart is in the hosiptal and i so want to just be with her, and have tried, but then i get to feeling so bad i've had to go  home.curled up in a ball of pain and disapointment in my self and life and body.
I think I know how you feel, and i'm sorry your where you are, and i'll beleive for you,if you can't, that theirs a answer and treatment out there for both of us, and others here the same.all will be in my prayers for releif and hope to cover all suffering.
                                                                                      humming4u

[aiMelissa]

For me (no dx yet) I know it is time to do something different when my mind is constantly consumed with the amount of pain I am having.  Like Quix said "seek more meds, worry about running out, and pain relief is always on their mind."  I was taking darvon (darvocet without tyelenol) and it was working good for months, then I had to take more D and more often.  Eventually I was using all the pills before I should be getting a refill and felt SO anxious about talking to my doctor.  I'm 25 and in pain everyday and worried about looking like a drug addict.  Luckily when I finally got the nerve to ask my PCP about something different (after a really bad week) she completely understood.  She gave me lortab 10 w/ 325 mg of tylenol and I take 1/2 to 1 every 4-6 hours and it is enough most of the time.  I just started them last month and it was the first time I'd actually had pills left over after refill time.

So, in conclusion, lol.  If I can't do normal activities (walk, play with kids, shop, etc) without being overwhelmed with pain or scared of hurting and running out of meds, I talk to my doctor.  

It took me a long time to get the courage to do it and find a doc that would listen.  I'm nervous abotu what will happen in teh future but for now I am alright.  :-)  

[Heather3418]

Time for Group Hugs...now gather round, closer, closer...come on, you deserve a big hug for all your kind words.  Let me thank you properly.  Come on, come on...that's right.  NOW GET READY.......BIGGGGGG SQUEEZEEEE.....doesn't that feel better?  Hope I didn't squeeze you too hard.

Thank you....all of you are precious.  My wishes for pain relief for all that suffer through daily, chronic pain.  I know it's hard to stay positive and move forward, but moving forward is all we can do.  I say my prayers for all of you.

Heather
Earth Mother

[sgtoverstreet]

I understand that ingesting cannabis can provide the benefits with reduced side effects.

[doni54]

Hi, sweet lady.  I am not dx, as you already know, but I am in constant pain also.  I am also like you, as I am not one to over medicate, and don't think I would ever let myself become an addict either.

I'm not really smart about all these things, as I've not been on any kind of pain reliever. Doesn't your fibro cause you to react to drugs differently?  I think I read that some where in my manys hours of research.  I seem to remember that unusual drug reaction was a symptom of fibro. Could that be why you can't get any relief?

You are getting a double dose of pain because of the MS + the fibro.  I can't even imagine what you are going through, just wish I could take it away and give you some relief.

I have been going through a bad case of nerve pain the last few days with pain level at about a 9 1/2.!!  Can't stand to touch my legs, as that's where the pain is.  I also have the pain from spasms that can reach that 10 mark easily.  So yes, though undx, I do know some of what you are feeling.

Elaine has great ideas about the pain management, and I hope you have success in finding someone who will help you.

One thing about us who live with chronic pain daily is, what to you say when your family asks how you are feeling?  When you hurt all day everyday how do you explain that....well, today the pain was only about a 5 on a scale of 1-10 or do you just not say anything?

I get tired of always being in pain, but I get even more tired of trying to explain to others what that feels like.

I love you sweet Heather, you are such a special person.  I pray that you will find the relief you so need, and find it quickly.

Hugs
doni

[Amyloo]

I have a lot to say on the pain issue, but want to just throw this in for now:

If a doctor tells you "there is no pain with MS", the response should be "OK, what else do I have in addition to MS that is causing the pain, and how do we treat it?"

[monotreme]

Please seek help at another pain clinic.  Maybe one in a large city or large suburban area.  And one that also treats spine patients.  They seem more open to helping people get pain relief.

Good Luck.  You should not have to live in chronic pain.

Elaine

[nncdalton]

I have been told that there is no pain in MS. How would someone know this if they do not have it? I have a tremendous amount of pain and there are no doctors who will treat it. I am sure that this is a frustrating issue for all of us. I was even refused treatment by a pain clinic. What the HELL?

[mokibear]

Sweet Sweet Heather, I feel so much for you. If I could take your pain away from you, I would do it in a second.

Rest assured that no one here would ever think that you are addicted to pain meds.  What you are looking for is some much needed relief and that is totally understandable. Daily pain can wear you thin, just knowing that every day you are going to wake up in pain can be daunting. I have no ideas for you, just my undying care about you. I think though that a good pain management center that has been suggested by others is a good idea.

I love you girlfriend and pray that you get some help for this pain.

Gentle Hugs
Mok

[MrsAristotle]

is amazing isnt it that many neuros even now say THERE IS NO PAIN IN MS. I have a forum buddy who has just been told this recently. SIGH.

I think this is a brilliant question, which i posted similar on here recently. When do you know its time to contact your doctor and ask for help?

I have a fantastic pain threshold. For example not so many moons ago i did a dive down the stairs on my bottom on my coxic, which broke, and never took one pain killer.

I find sleep my savior.

I can fall asleep about 7/8pm in the evening until about 6am if i am lucky not always if it is hot i usually end up in pain and awake.

I have tried gabapntin, and amytriptlyine which made me feel awful. I would rather have pain then feel rank all day from drugs.

I think when you cant stand the pain anymore then you need to see the doctor for help.

I can cope AT the moment, but when i know i cant, then i will have to take something.

I feel so sorry for you, i am 57 and like others even younger its just everyday the same isnt it. Tingling, fizzing, burning, buzzing, griping, etc etc.

[Quixotic1]

I apologize.  I never intended to imply any connection between you and addiction, but merely wished to show that people with inadequately relieved pain often face more than pain, but the misperception of others

Quix

[trueblue06]

I am thinking of you, this is just the pits, constant unrelenting pain.
Even though I can only guess your situation with the pain thing, I too have a lot of trouble with pain control.

My appointment at the Pain Clinic is not until March 2009 and my doc won't give me anything other than Endep ( Amytriptilene ) I am on the max dose at 2 nocte; Panadeine Forte max of 6; (I don't like to take more than that), 5mg Valium only when I just can't sleep and the stupid neuro says I should stop it because it causes "weird symptoms" Well, no it doesn't, it puts me to sleep and I get some relief from pain you dope! That's it, that is all I take.

I have the most incredible facial pain, it is not classic Trigeminal Neuralgia - God, how do you spell that, I can't remember, but it is constant, chronic and is the worst pain I have ever had to put up with. I have it all day every day and the only relief I get is when I'm asleep. The other drugs only take the edge off it they don't stop it. On and on it goes, just horrible.
My back and legs are always painful, worse when I wake up.

I don't want to be addicted either but hell, how much are you supposed to put up with before someone puts their hand up and helps you instead of treating you like a junkie?

What's the saying...."they shoot horses don't they???" not that I'm saying someone should shoot us but heck, give us something that works....please.
This problem is just the pits, I know how you feel, you are constantly trying to justify yourself and worry about the drugs but in the end it is your quality of life that is at risk. If opiates work then the darn docs should not withhold them I don't think. I don't know much about the other drugs as I am unable to get them because I am in limboland!
Hang in there Heather, at least you have access to some of the newer medication that I don't think Australia has even heard of yet!
I really hope that you can find the right thing so that you get some relief. The days and nights are long when all you can think about is the pain you are in.
Take care,

TB

[Heather3418]

I am glad that I do NOT fit into a most of those molds....I am NOT in the group that frequently seek more meds, worry about running out, and pain relief is always on their mind. BUT my pain is" inadequately controlled."  That certainly does not make me an addict.

Is pain always on my mind?...you bet it is.  My doctor's tell me that I am the less likely of the patients they see, to become addicted to pain med., A 30 day prescription lasts metwo and a half months.  They told me that patients that are addicted to pain medication, never complain of nausea and loopiness with the medications; as I do.  An addict seeks more and more and higher and higher doses as time passes and doesn't let any side effects keep them "from their drug of choice.".  I have been on the same dosage for years..

I needed to make that clear for anyone reading this post that might get the wrong idea of why I asked my question.  I seek pain relief, not more drugs....

Hence, my eagerness to know about the Baclofen pump instead of more pain meds.  Baclofen is a muscle relaxant, not an opiate.

Heather

[Quixotic1]

I read a vERY interesting review of chronic pain, addiction, dependence and tolerance to opiates.  One of the most interesting things it said is that there is a group of pain patients who are most often mistaken for addicted, med-seekers.

This group is people whose pain is INADEQUATELY RELIEVED.  They frequently seek more meds, worry about running out, and pain relief is always on their mind.  However, they are not addicts, though they may look it from the outside.  This is the group most often missed and poorly treated  by the medical profession.

As a physician, I will say that THIS IS TRUE.  

Heather - the amount of pain we are all expected to live with is next to none.  If you are having that much pain ("agony") then you need a sophisticated and enlightened pain management clinic.  I am in total agreement.  Methadone is NOT your only choice, but is the next offering of a mediocre mind.  Pain control has moved far beyond that.

Quix

[monotreme]

Hi Heather,
   I am not sure about the dose before the pump.  I can see that if the dose is too high, you could lose the ability to walk, since spasticity actually helps in walking.   I am hoping they have improved the pump since the time you knew the man with PPMS.  The physiatrist Craig went to raved about it.

  If you want, go on Moss rehab website and look at the botox info.  I saw a video on it and it helped people with spasticity be able to walk and relieved their pain.

  Good Luck Heather.
  Elaine

[Heather3418]

Thank you for your thoughts.  I wish something was available, so that I would not feel goofy.  If there was something available that didn't make me feel loopy in order to get some pain relief, I would try it.

I did try marijuana, but found that I actually felt like my head was spinning and was nauseated.  Maybe that sounds silly, but it seemed to make the neurological part of having MS worse.  I was really loopy.

Elaine-don't they give you a testing dose of Baclofen into your spine and see if it has the desired effect, before they decide to try the pump?  I dated someone with PPMS before and he had a Baclofen pump.  It helped so well, in my opinion; it kept him from being able to walk. I still saw that he had occasional spasms, where his legs would twitch and fly outward. It was sad.  God bless that man, he wouldn't even take medication for his pain.

Mok-I wonder if the pill form of marijuana would prevent the loopy feeling I have?  While some people might kill for marijuana, I actually don't see the recreational attraction to it.  My son-in-law, who has a severe case of Lupus, smokes it everyday and still has to wear pain patches and take oral pain medication.  He says the marijuana relaxes him enough to where he can tolerate the pain, if only for a little while. He says it temporarily makes him forget.

Kathy-I would like to know more about the topical creams this lady makes up and if you know if it helps.  Very interesting.

Pain relief is a touchy subject, I know.  The lengths that patients that actually use it as prescribed, have to jump through hoops to get it.  If you are on Oxycodone, you have to go to your doctor's office to retrieve a written prescription, show your driver's license and sign for it.  With no refills.  So again in 30 days, you have to repeat the same process all over again.  It is ridiculous.

I wish there was some way to get the needed pain relief without popping pills.  I just hate it.  Maybe it's time to look into a Baclofen pump.  Ought to stand out beautifully in a bathing suit...LOL

Thanks for your thoughts all.  It helps.

Heather

[Fluffysmom]

Here in OR, medical m.j. is locally legal (still a federal crime).  I know someone who swears by it, is a card carrying grower for many patients, and makes tinctures and creams to rub directly into the painful area, and all sorts of other products.

She has helped a wide range of patients with a wide range of pain issues.   Some people abuse it, just like any medicine.

I can't use it as I'm allergic to grass (seriously, I tried it long ago and had terrible headaches, stuffy nose, yuck!). I even tried some hemp protein powder not long ago and found the same results.

I'm still managing at 4 hydrocodone a day and 3 Lyrica 50 mg., with a diazepam 5mg. at bedtime.  It's not doing the job as well, and I'm wondering what to do next, too.

I believe that we have a right to decent pain control, though some of the older school doctors don't agree.  You don't strike me as the typical "drug seeker",(like, no way!)  so I would agree that it is time to ask for better pain control.

hugs,

Kathy

[spastic]

I had a friend pass away some months ago from cancer and that was the only comfort he had in the end.  I support this 100%.  Elaine, I think it was great of you to help out the families like you did.  You rock, my Dear!!!  Wow, Montel, I got him on the tube now.  You would never know he did that.

Love Ya,

Ada

[monotreme]

Montel Williams uses that Ada.  It is also available in pill form.  I really think it should be more available.  Even back in 1980, we helped patients' families smuggle it into their loved ones' hospital rooms.  

Medicinal "mary jane " as you put it, is legal in California and a few other states.

Elaine

[spastic]

Oh Sweetie, I just wish I could take the pain away.  I have went to the pain mgmt clinic and I did not have any luck with what they were treating me with.  My IM wants me to take either Tylenol 3 or hydrocodone every 4 hours to keep the cycle in check but what she doesn't understand that this cycle has been going on long before I seen her.  

I have heard of great things with medicinal mary jane.  I even researched it a lot and the studies are showing its a great pain reliever and, it actually makes the quality of life in the patient better.  But the studies are promising.  I hope I dont offend anyone here by bringing this up, especially you Earth Mother.  But when you live in chronic, daily pain, this has to be better than all of them chemicals we put in to ourselves.  

I just want to take everyones pain away, I love you Heather,

Ada

[monotreme]

Sorry Heather. I also wanted to mention that when I was working with cancer patients as a nurse, we always aimed for total pain relief, but if that was not possible, a "3" on a scale of 1-10 (10 being the worse) was somewhat acceptable.

Elaine

[monotreme]

I am really so very sorry for you level of pain, Heather.  It is more than any person should have to bear.

My first inclination is to try a different pain clinic.  You really need to go to an independent pain clinic that advertises use of new devices.  And if you think your pain is coming from the spine problems, then a spine institute that deals with chronic pain??  I will have to see what Quix thinks of that, if she reads this.

But anyway, pain centers that deal alot with spine patients, use nerve blocks, epidural injections, and there are also pumps which deliver continuous pain medication into the blood, similar to an insulin pump.

Perhaps a Baclofen pump which is inserted into the spine and delivers continuous Baclofen to stop spasms may be an option?

Last but not least, the rehab center in Philadelphia (Moss Rehab) is also using Botox injections into spastic muscles to stop spasms and give patients mobility.  Botox lasts for six months.

So if you think your pain is coming from spasms (lots of Craig's pain is coming from spasms) then I would look into those therapies.  Moss Rehab has the botox info on their website.  

You need to find a doctor who is willing to give you what you need to be comfortable and function.  Attitudes are changing towards chronic pain, but the process is slow.  And I think the neurologists will be one of the last specialists to embrace liberal pain management.  So hopefully you can find help with a different approach.

Best Wishes Heather.  I hope you are able to find true pain relief.
Elaine

[Heather3418]

I've been a member of this Forum for over a year...you're right, the Forum is great.  I certainly don't know what I would have done without all my friends.  I use to be a Community Leader on this Forum, but passed the "wand" to the more energetic folks in April 2008.  I thought by freeing up some more of my time, I could experience some more time to relax.  I am addicted, so with this Forum, I shall stay.

Congrads on your upcoming marriage.  When is the big date?

Best Wishes,
Heather