Might I ask for some healing thoughts/beads?

[Mattsmom277]

I have a 1p.m. doctor appointment. I know that there is no miracle concoction that can be given but I am in desperate need of relief. I've spent the past couple/few years on merry go round of specialists, tests, more tests, more specialists, before FINALLy being told what we KNEW all along, that I have multiple sclerosis. We first thought it was a relapsing remitting sort. Meaning periods of flares and periods of remission from symptoms. I have been bumped up to progressive form, meaning less remissions, and even in remissions, some symptoms will never go away even betwen major flares. I've spent time in critical care when I went stone deaf (scary) and lost my vision twice (thankfully came back both times but holy hades it was frightening). I have had periods where I could not walk without being carried. So many other symptoms I won't get into them all, but worse of all is the day in, day in, without reprieve, excruciating pain. I no longer know what it feels like to remember being physically able to swim or play with the kids outside, haven't planted flowers this year. Sometimes it takes a week to get up enough oomph to go grocery shopping. I've made it there at times to get 2-3 things in my cart and had to walk out and come straight to bed. I'm not quite 34 years old and this simply I won't take sitting down. I want some quality of life back. And I can no longer emotionally handle the intense level of daily pain that I have, not to mention unable often to even tie my running shoes or zip my pants up, wash dishes, simple every day things.
So I'm hoping the doctor does something first of about pain management today, second off, a medication tweak to help combat some of the worse symptoms that are really leaving me a young woman in the body of a very ill old womans body. I just want a quality of life.

If any of you can think of me about 1p.m. thats when i'll be sobbing to my doctor about how i am finding it more difficult to cope with the pain and the loss of any type of life outside my couch or bed. I'd much appreciate it.

My hardest thing is how to approach the pain management angle. I really have no addictions issues, but i will NOT allow other patients pill hunting to stop me from having my doctor reluctant to effectively treat my pain because I have 2 kids who need me, a house to run, and I'd sure like to be pain free enough to at least maintain a job again!!! I feel like I'm growing into a dust bunny in my own house. Its taking its toll even worse on my 10 year old easy child. She wants her mom back. Summer is coming. I need to do things with my little girl before shes too old to want to do mom/daughter beach outtings, sliding in park, hiking, camping etc.

Much appreciation in advance for any good thoughts sent my way. I really gotta spend this morning too figuring out how to stop being a wimp and address my doctor effectively on proper pain control. I've suffered with it worsening for years. It cannot go on. I no longer recognize my own life.

M.

 

[AnnieO]

Rattling everything I have handy for you... I understand completely!!!

 

[Star*]

Mel -

I did not know you had MS. I hope that your doctor is able to find some level of pain mgmt. /comfort for you. I'll be thinking about you today at 1:00 and holding you in my very best of good thoughts.

Hugs
Star

ps. I can plant a few flowers for you and when I do - you'll get pictures.

 

[Shari]

Sending all I got, girl. Let us know how it goes.

Hugs.

 

[timer lady]

Prayers, positive thoughts & white light for you. I understand the need to control pain.

Have you ever utilized or has your treatment team suggested a TENS unit. It helps a great deal with my pain (that along with methadone & vicodin). My doctors are not fearful of treating my pain ~ in fact, they know my family situation here & know I have to stay functional.

The funny thing is that I'm not addicted after almost 2 years on this stuff. I can stop for a couple of days with-o any effect. The doctors explained that if I have pain then the medications are utilized ~ if I didn't have pain they'd be concerned.

 

[DammitJanet]

TL...thats the way my docs are with me. I went in one day grumbling about how my legs were killing me and my doctor looked up at me and said "and? I would be shocked if your legs didnt hurt!" LOL. I could have beat him with a wet noodle. Obviously they were bothering me more than normal.

 

[Mattsmom277]

Thank you all!! I'm off in a minute to call a taxi. It's raining here, rain is evil to us MS'ers. Well, he'll see me at my worst. I literally am at my wits end. I am going to ask about a tens unit (if I can remember, I tend to forget alot, even with a list, part of the brain issues).

I'll update when I'm home. Again, thanks for all the good thoughts. I was supposed to get a cane last year but refused. Heck, I'm 33 years old. I must be in denial. I also can't sleep at night EVER for the pain. Now i am losing control of bladder and bowels as well. Fun for a young woman with a sexy fiance. These issues are sure NOT sexy

I just want some relief. I want to function to some degree. That shouldn't be much to ask at my age. Right??!!!

 

[totoro]

I don't remember what time zone you are in? But I will be thinking of you for the next couple of hours. I am getting ready to go for a hike up into the Sonoran Desert, I will take a moment and think of your health...

 

[flutterby]

T - She's EST.

One thing to keep in mind is that is has been proven over and over that patients who take pain medication as prescribed for their pain management are statistically less likely to abuse the medication than the general population.

I hope you get some relief.

 

[house of cards]

Thinking of you and praying hard that the doctor really listens and can offer you some relief.

 

[lovemysons]

Out here thinking of you too, Melissa. Hoping your doctor "hears" you and offers you new pain management tools. Had no idea your life had been so affected by MS...it sounds truly awful.

Loving thoughts and care,
Tammy

 

[everywoman]

Thinking of you Melissa and hoping you can find some relief.

 

[Lothlorien]

Hope your doctor is finding some answers and you are able to find some relief.

 

[KTMom91]

Sending good thoughts and healing prayers. Hope your appointment goes well.

 

[trinityroyal]

Jumping in a bit late, but sending good vibes, rattling beads. Hope your doctor is able to provide you with some relief from the pain.

 

[Marguerite]

What I did was ask the GP to refer me to a pain management specialist. A GP's help with pain relief is a lot more limited. A pain specialist has access to more resources and ideas (including TNS). I was on a combination of paracetamol and codeine for years (decades) and also dealing with a former friend (then stalker and idiot) who told everyone I was mentally unstable and an addict. Noe of it true, of course.

The thing is, if you take strong pain medications FOR PAIN, then addiction isn't an issue. It's when you begin to take the pain medications for the added effects. Me, I hate the feeling of weak throat muscles I get if I take more than I need 9which has happened occasionally). If you match the pain relief to the pain levels, take enough to get the pain under control but not fully eliminated, then you are unlikely to develop an addiction problem.

I got to a point where the codeine was not enough. I've been on morphine for 14 years now, although the dose has increased over the years. I recently was able to drop the dose a bit. The thing is, it makes a HHUGE difference to my ability to cope. Without pain medications, I'm a puddle of misery in the corner, unable to move. On the medications, I'm alert, confident, mentally capable and often physically capable. I can almost seem normal.

My biggest problem is when something interferes with the system of pain managment we have in place. For example, if I have a gastric bug or food poisoning thta means I can't keep my pain medications down - the resultant increase in pain can lead to more vomiting and shock, which then escalates out of control. Under those circumstances I need to go into hospital for a shot of morphine (often with anti-emetic), wich then can turn around the problem. The problem has been, convincing the hospital that is what I need. The hospital near where we live hasn't been too much of a problem, but on holidays it has been worse sometimes. One hospital tried to tell us they had no pethidine on the premises. Yeah? So how did they treat the car crash victim who was brought in?
I took to carrying a letter from my pain specialist and from the GP, explaining the case. And in that situation on holiday, the hospital tod us that carrying such a letter was a clear sign of drug-seeling behaviour. husband asked them, "So how should we proceed, if she is genuine?" but they wouldn't answer. Probably didn't want to give us any pointers...

The pain specialist hasn't been able to help us overcome this problem, except to say, "Next time get the hospital to call me, whatever time of dsay it is. It is what they should have done that time, too."

I don't have MS but a lot of my symptoms are very similar. This has made a huge difference to my ability to live a normal life.

The other important advice I can give you - exercise as much as you can but not to the point of exhausting yourself and causing harm. Do the best you can with what you've got, in other words.

Life is for living. Go do it.

Marg

 

[Mattsmom277]

Thank you all again for your bead rattling and positive thoughts. Sorry I didn't update yesterday, things got hectic in home life, and then I was in bed early (pain YUCK).

So I had yet ANOTHER MS medication added to the cocktail I'm already on. I'm currently on 8 different medications for MS. I'm also on lorazepam. I took it years ago for anxiety but don't really deal with anxiety anymore (YAY!). Now it is prescribed to loosen my muscles, particularly my legs, as they are prone to debilitating spasms that strike without warning. I find the dose too high however when I try to cut back on them, the spasms come back with a fury. So I take the buggers as prescribed after learning the hard way.

So yeah. A new MS medication to my cocktail. We also discussed that indeed I need to travel once again to my neurologist. Its a pain to go because I don't drive and it's about 2 hours away. But I have a great neuro so that is good. It will take months to get a appointment anyhow, can worry about the trip when time comes.

As for pain medications, he gave me 3 weeks of Tylenol 3 (which honestly, don't do anything for my level of pain. At. All). My doctor is not one who likes to decide what level of pain medication a patient with chronic illness should be in. I think he is trying to be responsable so that he doesn't overprescribe (or in my case under prescribe). So I return to him in 3 weeks to discuss if I see any difference with this new medication he prescribed. I did search some MS forums I have used in past and haven't seen many others who've had much affect with the medication, but I'm goign with an open mind to hope it helps somehow.

When I return in 3 weeks he will have a package for me to fill in which is for the pain clinic doctor. I've never been to a pain clinic. Not sure what to expect. Anyhow, I'll get that package to fill in and I'm told to have those close to me to write letters as to what THEY see in terms of my pain and the limits to my life. So my fiance, and both my kids are going to write letters. As well as a friend that pops by when I'm really not doing well. She pops in at those times, periodically and does lovely things like wash up my dishes or do a bit of laundry or vacuum for me or dust etc. These letters will go with the package I fill in to the pain doctor. I'm told that pain doctor can order a tens unit if he thinks it would benefit me. It will probably take a month or more after my referall, which isn't for another 3 weeks. So a couple months before I see him. Sort of disappointing as I'd have liked something to help me be able to function and enjoy the summer holidays with the kids, expecially easy child. But at least it will happen by late summer and I've heard good things about this doctor. If he can help me get back to functioning, I'll be very happy. I don't believe I'll ever again have NO pain. But if it can be controlled enough for me to do day to day activities and maybe get some FUN back to my life, I'll be more than satisfied.

If anybody has experience with what happens when you go to a pain management clinic, I would love to know your experience if you are willing to share it.

Again all, thank you for your good thoughts!!!

M.

 

[Marguerite]

My problem with TNS - the electrodes don't come in body suit format.

I can't tell you what you'll find at the pain clinic. It really depends on the sort of patients sourced by the clinic. The one we go to is a palliative care clinit at a hospice, a lot of the other patients are terminal cancer (or similar). I did have a woman I knew who picked my brains about pain management, I suspected she was a substance abuser. She certainly "used" people in a simlar way. I happened to see her at the pain clinic a few years ago, she didn't seem to recognise me (good). I don't know how she was going; the doctor was fairly astute about medication abusers although he would have give her relief for genuine pain (and I believe she had a fair bit of that). After I told her about the clinic and she began going, she kept pestering me for info on what I was getting prescribed and how I got the doctor to give it to me. I clammed up fairly hard at that point (I hadn't told her what I take, in any case). I think she was going to try the route of "Hey doctor, you prescribed that for Marg, so why not let me have some?"

So go carefully with other patients. One pain clinic I went to was overpopulated with addicgts, it felt weird to sit there and listen to their conversations (bizarre). As I said about the current one, it's loaded with terminal patients (with a few people like me & husband, long-termers). Another clinic I went to was skewed towards people with MS or similar, so the waiting room was like an impromptu support group.

Just be careful about sharing personal medication info. I've been burned...

Marg

 

[Mattsmom277]

Thanks Marg!

I have heard of this pain clinic as it is the only one here in town. It is based right inside of our local hospital. I do know people who have utlilized it. My cousin who has severe rheumatoid arthritis and needs complete knee replacements (she's too young to quality, still another 10 years plus to go before they'll operate poor thing) is a patient there. I know there are MS patients, cancer patients, short term patients following car accidents etc. We also have a seperate clinic for abusers/addicts which includes a methadone program etc. They are pretty cautious round these parts about what clinic you get sent to. Docs are pretty smart knowing which patients are drug seeking and which ones need to have a quality of live due to a diblitating disease.

I do know with this pain clinic, whatever pain plan they put you on, for 6 months you must do urine tests a few days before each renewal. They are checking your levels to be sure you are taking the medications as prescribed. They also test each time for all other drugs to be sure you aren't using other street bought prescription drugs or illegal drugs. Caught once, you're out. Or if your levels show you aren't using your prescribed medications, they automatically assume you are holding some back to sell on the street, you are out. After a long period of this, once they are comfortable you are using medications as directed, your general practictioner can carry on from there to prescribe monthly, but at any time they can ask for a urine sample and blood sample to test you. I know some people get angry as they feel they are being treated like addicts instead of legitimate people in need of pain relief. I see it differently. I like the policy. I see too many people wandering round this town drugged out of their mind. I have no problem with this clinics policy.

I just don't otherwise know what goes on. As in other than prescribing pain management plans, if they also offer other ideas such as physiotherapy or other approaches to also help my body start acting like a body should lol. I'll try anything if it gives me a quality of life back. If that makes sense lol.

 

[TerryJ2]

M,
say it just like you said it:
physiotherapy or other approaches to also help my body start acting like a body should lol. I'll try anything if it gives me a quality of life back.

That is your philosophy and a dr can respect that. Tell them the drugs help, but long term, you are happy to do physiotherapy or other exericises to keep your body in the best shape possible.
Hold his/her feet to the fire and ask for a plan. If he says, "Try this drug and get back in 3 wks," tell him that's not good enough. Try to be assertive.
Good luck!
PS That pain clinic sounds interesting.