14 years of chronic pain, anxiety and depression: should I still have hope?

[Franc_I]

Hello,

I have suffered anxiety, panic and crippling depression for most of my life. 14 years ago, chronic abdominal pain was added to the mix, which is particularly strong right now.
I saw every specialist under the sun - including alternative therapies - and I had all tests done and I’m now on too many different meds that give me unbearable side effects.

Five years into the chronic pain, I asked around on a free medical forum and two pain specialists, as well as a pain specialist I saw briefly, all said that if I had the pain for five years that it is unlikely that it will ever go away. I thought: why on earth would you tell someone that? Given the power of placebo and the power of the mind on pain, statements like that can well be self fulfilling!
I still think about that often. Is this really true? Will I have this pain forever or is there still hope? Hope is everything?

My questions are:
• Is there still hope?
• Are there new treatments I may not be aware of?
• When my pain is really strong and I feel very down, especially at night, it would help to online chat with someone - I have diagnosed phone phobia - which I know Beyond Blue offers, but I need to tell the same story to a new person each time. Is it possible to ask for a particular person with a new chat?

This may sound strange, and I don’t want anyone to freak out, but when the pain and sadness are really bad, I think about taking an overdose of something that would gently put me to sleep forever. I would never do that and I never made preparations for it, but the thought itself can give me peace. Like at SOME point, when I die, I will be released from this pain.

If you have read this far, thank you for your interest in me and my story. If you know of any help out there that I may not have considered, I would be very grateful.

[Sophie_M]

Hi Franc I,

Welcome to the forums and thank you for sharing your story with us today. It is an incredible act of courage and we want  to say how happy we are that you have found your way tot the forums for support, even though we are really sorry that you feel you need this community. 
Chronic pain can be very difficult to manage and we are sorry that it is a part of your life, it sounds like you are doing your best to find a way to best treat it and live with the symptoms. 

We are concerned that you are feeling really low at moment but can hear that phonelines are not what works for you. There are a few links below of webchats that may be useful for you - they aren't 24/7 but can be a great way to seek support without having to make a call. We can't gurantee that you would be talking to the same person from session to session but please know that our team our wonderful, helpful, understanding and kind. 

WebChats
Beyond Blue
https://online.beyondblue.org.au/WebModules/Chat/InitialInformation.aspx
Lifeline
https://www.lifeline.org.au/get-help/online-services/crisis-chat

If you feel unsafe at anytime, this is an emergency and you should call 000. 

Thank you again for joining the forums and please feel free to update us if you feel comfortable. 

Kind regards, 

Sophie M

[Guest_1643]

hi franc

those comments are untrue

there is hope

we don't know how to body works and changes happen all the time

maybe if there are other areas of ur life where u can invest hope and see change, the pain will be able to go away while ur focus is elsewhere. focussing on the pain and the worry about wether it will go away could make it seem worse or more intense

that said, of course, be assertive and get all the help u need and maybe ask others who have had similar health issues what treatments are out there and what doctors have a good reputaton

sometimes it's just clicking with and finding the right professional, by hearing others success stories and seeing what helped them. someone you know may have heard of someone somewhere who helps with this and helped their second cousin and it was amazing.... listen and ask and give things a shot. u never know what will work

i believe ur pain is so horrible and am so sorry for whatw you're going through

im only a stranger on the internet speaking honestly, but i also believe it will not always be this bad. and i'm willing to hold hope for u while u try out that thought for size

sending care and understanding.

[Franc_I]

Hi Sleepy,

Thank you for your encouraging email. I really appreciate it, but perhaps you can understand that after 14 years - with each time getting my hope up for a new drug or treatment, only for that hope to be taken away again - I just don’t believe it anymore. I’m even wondering if it wouldn’t be less painful to accept that I will have this pain / depression cycle always, so that I won’t have my hopes taken away anymore.

I’m a retired mathematician and I am good at working out problems. But even for me this is just too complex:

1. The abdominal pain is not at the same level all the time. Why not? No idea.

2. Certain foods seem to make it worse. I think.

3. When I’m worried (mostly about money), the pain and anxiety increase too

4. The pain causes depression and anxiety, which causes more pain, which cause more depression and anxiety

5. Painkillers may help with the pain, but also constipate, so do pain killers help or make it worse?

6. Every (mental) health practitioner I’ve seen says that going for a brisk walk it as good as an antidepressant. Not for me though: when I return from a 20 min walk I crash into a low mood. Doctors say they have never seem that.

7. My support worker treated me with a traditional cupping technique which helped really well. Once, and never again after that first time. Was it my hope that made it work the first time?

8. I’ve had great results with several non-opioid based meds, but every time they only work for a few weeks. It’s like my system refuses to give up this pain. It’s like the pain is trying to communicate something to me. I still haven’t figured out what that might be, though.

You mentioned that it would be helpful to ask other’s about their journeys. Where should I go to find people in similar situations?

Thanks again - Franc

[Guest_1643]

hi Franc -
I am not coming at ths from a mathematical perspective, just from my own as someone who has struggled with poor mental health most of my life and recently found approprate treatment and help after a suicide attempt.

I ask please if the advice I give seems totally wrong that you feel free to reject it etc but bare in mind also please that i am a vulnerable person myself and would like to be spoken to gently.

I was suggesting speaking to ppl u know - friends, family members, anyone, work colleagues etc, asking if they know anyone who has struggled with similar, and continuing to have those cocnversations.

Eg over time i heard one health professional mentioned a lot, and in the end I sought out that professional, based on the reputation and recommendations from ppl I knew.

I'm sorry for ur pain. Approaching this mathematically is beautiful although sometimes eg with PTSD which I suffer from, there are certain traumas and mental health pain that lives on in the body, which doctors dismiss and don't detect. An interesting book on this is The Body Keeps the Score.

Re what the doctors all say about excercise... don't despair if that doesn't work for u. That is maybe a bit dated. Any doctor who is certain about something that helps for MH is, in my opinion, not completely correct. Different things work for different ppl.

Years ago CBT was the gold standard treatment for depression, many ppl say now that it made them feel worse about themselves. It never felt right to me, and I'm sure I was told there was something wrong with me because I didn't like it or respond to it - but now many ppl express this and it's certainly not the gold star, with new treatments taking precedence. A lot of these things go in trends. There was certainly a time where excercvise was seen as very powerful in healing depression. I'm not saying it's not true, I'm saying it's not only true and there are other factors and approaches, and for some, a brisk walk doesn't work.

There are also different types of deperssion, etc and different treatments accordingly. Finding a personalised treatment that works for u could very well not include going for brisk walks and that's perfectly fine. Sending support

[Doolhof]

Hi Franc,

I too welcome you to the community. It sounds like you have tried different options regarding your pain. I'm sorry to read you have been suffering so much.

You mentioned a pain specialists. Were they able to assist or advise you in some ways to reduce/accept/control the pain? Have you seen a dietician or a gut specialist?

During my life I have experienced debilitating back pain that had me almost living on the floor for a year or two. During that time of trying "everything possible to control the pain" I had no idea how to get through one day to the next!

I understand the dark thoughts, the pain and the cycle you can go through.

Concentrating on the pain made me feel it more intensely some days. I also realise the pain can be intense to begin with! Does anything help reduce the pain and discomfort?

Hope you find some answers and solutions! regards from Dools

[Franc_I]

Hi Sleepy,

You totally rock, you know that? To give so much of your own time to help strangers - over 3,000 times I see - is totally amazing. Thank you.

you mentioned that you like to be spoken to gently. Is there anything I wrote that you took as being harsh? If so, I certainly didn’t mean to. Just let me know and I’ll do better next time.

My psych agrees with you. She told me that the pain in my lower abdomen is my body remembering what was done to me when I was little. I wonder why the body wants me to remember that every day, though.

I will certainly look-up that book you mentioned.

Thanks again for listening, Sleepy.

Xox - Franc

[Franc_I]

Hi Doolhof,

Your handle “Doolhof” makes me think that your roots are in the Netherlands or Belgium, like mine are.

Yes, there are strange things that help, which are not easy to replicate, though. Recently I went Sky diving with my son for the first time and after the dive, for the rest of the day my pain was gone. The same happens when I go on lunapark rides like a roller coaster or one of those big pirate ships that swing back and forth. I mentioned this to my medical team, but they don’t k is what to do with that.

Yes, I did see a professor in the city who specialises in the lower abdomen and he says that for 50% of his patients with my type of pain the cause is anxiety. I think he’s right, as when I’m stressed - which I am most of the time - my pain increases.

Cheers - Franc

[Doolhof]

Hi Franc,

I have some dear friends in the Netherlands, my avatar picture of the tulips was taken there. The basic Dutch/English dictionary I have stated Doolhof means "maze or puzzle". That is how my life feels at times so the word was chosen for that reason.

I too had gut issues for years which has thankfully subsided, the pain can be intense. I think I have transferred that pain now to my back, shoulders and neck! I was told the pain and discomfort was probably due to stress.

Regarding the reprieve of the pain and discomfort you feel when engaging in the activities you mentioned, I am wondering if you may gain some relief if you watch You Tube clips of these activities or other high energy/adrenaline filled activities.

In the past I have been told if we can see images and imagine certain situations in our mind, then our minds do not know if we are doing them for real or just thinking about them or observing them. So I am wondering if that might work for you?

When I am feeling really stressed looking at clips of beaches, beautiful gardens, cute animals, wild life and so on can help me calm down again. Just a thought!

Hope you find some answers. Cheers to you from Doolhof!