Feeling hopeless

1

Hi everyone,

While i've been struggling with it for years, this is only a couple months past my diagnosis date. I try to always stay positive but lately I am feeling so hopeless and alone. My neurologist has been less than present with me (had to ask her what she was treating me for and if it was TN on the second appointment. She said, "yeah, that is what i've been doing" and didn't say anything else than that). The meds have not been working well to control the pain and we've been piling on the opiods to hold me off till I get a new neuro and into pain management. This has left me drugged, emotional, constipated, dopey (memory problems), and uber tired all the time. Even with this, I still have pain. I just got an appointment date with pain management in a couple weeks but have had no luck finding a doc with experience in ATN; my primary care person is looking as well. I'm also in the middle of my residency as a chaplain and feel like I can't do my job at all. Without the pain meds, i'm over the top hurting all the time, emotional, exhausted, and forgetful. With them, i'm emotional, beyond tired, forgetful, with a bit less pain. It's really a no-win situation I guess.

I just don't know what to do anymore. I'm only 31 and am thinking to myself, "are you ever going to be able to hold down a job"? "Are you even going to be able to make it through this residency"? I feel like there is no one to really talk to who doesn't get nervous when I ask these questions. My therapist is great but he's really the only one. How do we live like this? I love my life but feel like it continues to be ripped out from under me. It was bad enough when I just had really bad TMJ problems my first 28 years of life. Now with ATN on top of it some days I just really feel like curling up in bed all day and drowning out everything and everyone out.

How do you all get through these kind of days? I'm quite certain we all experience them from time to time. Like my therapist today said, I would really like to knock my inability to function down from a 99 to a 98 (or even 97 if i'm lucky). Any suggestions on how to cope?

2

A couple of thoughts, Laura.

First of all, I think it would be constructive for you to find and attend periodic in-person meetings of a chronic pain support group. The TN Association operates a network of these groups in the US. Start with this link: http://www.fpa-support.org/find-help/ . You may also be able to locate a local group by referral through a large local hospital patient affairs office.

Second, and since you are already talking with a therapist, it would be in order to inquire concerning whether the level of your depression has reached "clinical" and may warrant anti-depression medication administered by a psychiatrist who is licensed to supervise meds (psychologists and counselors aren't). Some of the tricyclic antidepressants are also co-active against chronic neuropathic pain.

Third, there is a National Crisis Hotline reference on our homepage. In addition to providing intervention support services for people at their wits end, that hotline may also be able to refer you to local resources for dealing with lower level chronic depression. It's worth talking to them.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst

3

Sometimes I feel these days are a test of our faith. I feel why me, why can’t I just wake up and be normal and then… I cry. Because that’s all I can do, is cry. I am still trying to find the right combo of meds that will work to completely control my pain. My heart goes out to you Laura, I really do share how you feel. The only thing I can say to you is what I keep telling myself ; never give up, never give in. Peace, Min

4

Thanks you guys. Some days are just simply harder than others. I have been on an anti-depressant for quite a while now that helps control the chronic depression that comes with chronic illness. It helps quite a bit. Some days I am simply more sad than others, which is why it is helpful to talk with a therapist to continue working on the day to day hard stuff. If anyone is worried about suicidal ideation, please don't be. That is not even remotely where i am at! I'm simply feeling the tough parts of life with this terrible condition and am feeling sad and fearful, particularly about what the future holds for me work wise. I spent eight years in school and am doing another year residency to be in a career I love. Yet, here I am, barely able to make it through a shift. Tears and pain really do get in the way of doing what I love.

While there is no support group active for TN here in Seattle at the moment, I agree Red, I should really look into one for chronic pain. I would imagine the hospital I work at can help me connect with one. Considering how lonely i've been feeling lately to find others who understand the kind of pain we experience, it would be helpful to talk with others.

Thank you!

5

You always got us. I simply meant don’t let it win… Min

6

Just sending you big hugs and letting you know you're not alone, Laura. Send me a message anytime! ~ Vicki

7

Thank you all, you have been so supportive! I have been looking for a local support group for chronic pain and suprisingly have found nothing! The one I did find costs $20 a week which is just not happening with my budget.

In meetups.com there are a number of people very interested in a support group. When I get paid this week I plan to create a group in our area and try to get something going. There is a strong need for it in our area and with my experience as a pastor/chaplain I think I could be just the right person to lead it.

Thank you for the motivation everyone; wish me luck!

8

"Pastor"...there is nothing like the power of prayer. You are in a difficult spot, concentrate on the WORD. Psalms 30:2, Psalm 18. Romans 8:18, there are MANY more. I was operated on May 17th, before going in Psalm 30:2 convicted me that I would be healed. You can be healed as well.

God Bless,

J Parker

9

Hi Laura

am so sorry to hear about the difficult times you are having.

I have been reading Eckhart Tolle and practising his teaching of total acceptance, in the moment of how things are, and if I just can’t accept then to accept that I can’t accept! For me this is really helpful, as I would get down and then feel bad about feeling down… .which just made things worse! Acceptance also seems to help me to be very loving and gentle with myself and to behave as if I was my own best and very caring friend! I hope this makes sense.

with love, Maggie

10

Beautifully put, Maggie. :) That's a lifelong lesson, isn't it?

11

I can understand. I was a very optomistic person for many decades - it will always be better later...

this has been one of the top 5 bridges for me to cross and its shaky at best - this changes your personality - and I think that is my biggest fear --- because even if you are not in pain currently - your brain still acknowleges it.... scary stuff. I lean on my pets for comfort - I hope you have something that gives you solace.

12

a support group would be super. now im looking. have a big hug!

neuros can be replaced also. also some headache clinics treat TN.

I am seeing one in NY'.

I think Im more angry when a dr. does not provide the help needed.

please make sure you take the correct meds including anti-depressants.

get some meditation tapes and music.

bring plants into your room.

can you get a massage therapist?

pain makes all of us hurt. you are not alone.

13

I have an idea.

You could start a group. Maybe even just a chat group. I know that may sound crazy but I think you could do it. It doesn't have to be anything 'certified' or 'formal' or anything like that. Why not just put it out there on a post on a site you trust or through the Hospital. I'm sure there are many people who would just need a place just to have their voice listened to by another.

As advice from a Spiritual person; sometimes, when looking for sheep, all you gotta do is just be the shepherd.

You may find a lot of solace you need by leading and counseling others through your faith.

May your path have less boulders and more pebbles.

Best Regards,

RH

14

That’s sweet Rockhopper girl. Sounds wonderful. Min

15

Hi Laura

I think you will be able to help a lot of people also feeling lost in your area and dealing with a lot of pain. Pain is difficult and isolating to a certain extent. When in real pain, we tend to withdraw. It is a great idea that you should start up a pain support group in your area. I am sure many people will be in great need of it. I hope that you find the support that you need too. Best wishes and I hope that you feel better soon.

16

Rockhopper, when you are ready to do something concrete along these lines, you might contact the patient liaison office of a large local hospital. They are always interested in working with people in the community to provide support services -- and some of them train facilitators to work with people in pain. One of the ways you can make yourself the most useful and effective, is to know about patient support services in your area. The patient liaison (or "outpatient services" offices can get you connected to the networks that are already there.

Go in Peace and Power

Red

17

I feel the same way as you! I’m only 22 years old and and spend my nights balled up in a ball crying. Ive just been diagnosed so I’m sorry I can’t help you but I am here if you ever need to talk. I hope you feel better!

18

Juneaux, I would suggest that if you're newly diagnosed, then our Face Pain Info tab might be a useful read for you. Sorry you're hurting...

Go in Peace and Power

Red

19

Dear Pastorlaura,

I can relate with the emotions you are going through.

Even at 39, the prospect of knowing that this will impact my future for the rest of my life was a fact which was hard to accept.

I've tried countless combinations of medications including, but not exclusive to opiates and anti-convulsants. I finally have found a cocktail which gives me an acceptable amount of pain relief, and although I've applied for disability, am thinking of going back to school.

Please keep on plugging. Hang in there. We are there for you, for sure. However, if you find yourself needing to, please remember, as Red mentioned, there is a National Crisis Hotline given on the home page of Living with TN.

Please remember that there is hope in this situation. My wish for you is that, through working closely with your physicians, not allowing your pain to be dismissed, that the medication, or combo of medications which bring you the relief you need to pursue the goals you've laid out for yourself!

Let us know how your Pain Management appointment goes. Above all, the best advice that I can give to you, and I have stated my credo regarding this topic many times. "DO NOT LET YOUR PAIN BE DISMISSED"! It is their job to treat it, and with the least side - effects possible. It may take awhile to get the best medications for you adjusted to the level where they perform at their optimal level for you, but this is supposed to be exactly the Pain Management Specialist does for you.

If you feel that you are being treated as a number, and have means to seek out another doctor, do so!

Your friend,

Stef

20

I do have, what I consider to be a good medication regimen. However, I also use "alternative" therapies too, Elaine.

My plants and relaxation music help me as well.

If I could afford massage therapy, I would try it, certainly

Tealight candles are relaxing in the evening. I also use aromatherapy. I find that different scents can actually REDUCE the pain I am feeling during an ATN flare-up.

This may sound odd to some. But, I will go through my selection of scented wax tarts at night and find the ones which are the most soothing to me at the time. I buy these, usually when Yankee Candle is having a seasonal clearance sale.

I find that the clean, soothing scents such as "Mint", "or Eucalyptus" will help a bit if I am in the midst of a flare-up. While the fruit scents will help lift my spirits, if my medications are alleviating my pain, but I am feeling down, so if this is the case, my favorites are "Pear", "Spiced Orange", or "Sweet Strawberry", for example.

If I am out of pain, as well as in a good mood and ready to be productive around the house, then I find soft florals, such as "Fresh Cut Roses", "Lilac", or " Sweet Pea" are motivating without overpowering my senses.

These go in tart burners, heated by tealights, which provide a relaxing ambience, and pop out, rather easily with soft pressure from on one side with a kitchen case knife. Some perfer to use scented oils. I prefer scented tarts.

I stick to the soft smells, mostly. Anything else seems offensive to my nervous system.

I am glad you brought up relaxation techniques. These are the ones I use, but I am sure that this subject could be expanded upon greatly. I believe I will find this subject matter it's own forum.

These "creature comforts" can be very complimentary to medicine.


elaine48 said:

a support group would be super. now im looking. have a big hug!

neuros can be replaced also. also some headache clinics treat TN.

I am seeing one in NY'.

I think Im more angry when a dr. does not provide the help needed.

please make sure you take the correct meds including anti-depressants.

get some meditation tapes and music.

bring plants into your room.

can you get a massage therapist?

pain makes all of us hurt. you are not alone.