Other Living with chronic pain

[SURVIVING STILL]

Unfortunately, I suffer from Fibro and Arthritis pain all day every day. I take Gabpentin for the pain and it really doesn't help that much. A hot bath with Epson salt to soak in helps for a bit with my pain.

 

[Melody coates]

I have chronic aches in my arms and legs and even get headaches from time to time. I've noticed this happens when my symptoms flare up.

 

[barefoot]

Yes, I have chronic pain in my hip. I also get migraines but not regularly.

Chronic pain is so debilitating - and it's EXHAUSTING! So, I really feel for you.

I changed hip consultants earlier this year as I finally realised and accepted that I wasn't getting anywhere with my previous one. At the same time, I just seemed to suddenly really notice for the first time just how many pain killers I was taking every day, which actually shocked me. The new consultant identified the problem - result! But there's not a permanent solution at the moment - not so good! So, at the moment, I'm managing the problem by having steroid injections every few months. It's not correcting what's actually wrong, but it's a short term solution in terms of pain relief.

An interesting thing that came out of talking to my therapist about it...we were talking about the fact that I'm not very connected with my body generally (this is for a number of reasons, I think) and that I hate doing my physio exercises because it makes me feel more aware of my body and I don't like that feeling at all... She said that when people experience chronic pain they often haven't got a relationship with their body...they have a relationship with the pain. And that's very different. That was a useful distinction for me to reflect on.

In terms of other coping/pain management skills:
- Not self-medicating/over-medicating in a way that isn't helpful
- Knowing my limits and identifying things that make it worse/things that help – then trying to live accordingly to reduce things that will exacerbate it and increase the things that might ease it/that don't really affect it
- Seizing the moment on good days - doing things you want to do when you can manage them
- Prioritising taking care of myself generally - instead of turning on my body for 'letting me down' and 'being useless'.

Good luck - hope you find some things to help.

 

[barefoot]

Also - not sure if this is useful/relevant or not but I've just recently bought a copy of Your Body Speaks Your Mind by Deb Shapiro. Haven't read it yet, but I'm interested in its message about how our emotions/thoughts affect us physically. She doesn't say physical illness isn't real, but that the body/mind connection is important and can tell us so much.

My pain definitely flares up more when I'm stressed or not feeling in a great place or if my PTSD symptoms are worse. So I'm looking forward to any insights from this book.

 

[Ivan the Elder]

It is possible to be much too aware of your body, which is how I am. One of my problems is that I have a special kind of tinnitus known as Somatic Tinnitus. I "hear" this very high sort of electronic "non-sound" that keeps perfect time with my heart. So, whether I want to or not, I always know exactly how my heart is beating. I can count the beats regardless of how noisy it is around me. I have always had this and it doesn't bother me due to the kind of sound but knowing how your heart is racing can be disturbing sometimes. Sometimes I think it is too slow but it isn't. I can also hear it when it "skips" a beat or two.

I have pretty much learned to ignore my pain since I have had fibro for at least 40 years. It has to get pretty bad before I really notice. Unfortunately it does get that bad sometimes. Pain killers don't make much difference. One trick I learned with opiate pain drugs is to not take them for half the day. They have a short "half life" which is the amount of time it takes for your body to reduce the amount actually active by 1/2. If you cut off the opiate during a 12 hour window (half the day) you do not build a tolerance or develop addiction because your body is used to having close to zero every day. This won't work very well if you are taking timed release pain killers so I always insist on having the quick acting type. Then you must convince your doctor that you keep close track of how much you are taking and when.

I keep a daily log of what drugs I take and the time I take them. By doing it this way my doctor feels safe in me taking high doses without overdosing or driving while impaired. When I am at home and not going anywhere I can take a high dose which will be somewhat effective and helps me deal with the pain at least a part of the day, when necessary. I am currently on the Harvoni Hep C treatment and it has upped the fibro pain, which I expected. My doctor has given me a script for fast acting morphine which helps a lot. If I didn't keep a log he would never prescribe it.

 

[Chava]

She said that when people experience chronic pain they often haven't got a relationship with their body...they have a relationship with the pain. And that's very different.

Wow. Yes! This makes a lot of sense to me. I made a choice to recover from anorexia and tried to push myself with good and healthy intentions. But the connection to my body just couldn't be forced. Within about a month of getting to a healthy weight I developed pain that went on for years (and persists). I traded one disconnection for another and I'm still working on getting connected to my body. I don't experience good feelings or sensations often, so am working on creating and noticing those. I tend to feel nothing or pain. The pain consumes me and yet also feels separated, like an angry animal I'm carrying around. Not sure how else to describe that.. :O_o::blackeye:

 

[Gadgie]

Aye! That's a good way to describe being in constant pain, I describe itas, .......tooth ache in my back.

As that's what it feels like, on bad days I can hardly move around at all, they are the worst days, made worse by living alone with no one to help, or even talk to?

 

[Ivan the Elder]

made worse by living alone with no one to help, or even talk to?

That is where I now find myself. After having been married for 44 years I am now living alone with very few people that ever visit. It has been that way now since a little over half a year. I do not like it at all. While I have plenty of things to occupy my time I just don't like being alone. This is the longest I have ever lived alone in my life. It isn't going to change either for at least another half year. Then I will be moving to Victoria in BC so I can go back to university. I hope I will be able to meet somebody there to live with and I know I will meet plenty of people to be good friends with. Where I live now is a very small town with a population nowhere big enough to have a good chance of meeting a future partner. Plus, I very much want to go back to school. There is research I want to do and it has the possibility of maybe saving the lives of hundreds and even thousands of children per year.

 

[RavenGirl]

@shrinkingviolet , I too suffer from debilitating migraines. Mine are also hormonal, made worse when I ovulate and when I get and stop my period. Stress, changes in barometric pressure, lack of sleep, strong odors, fluorescent lights, so many things contribute to my migraines. I used to have about 22 days of migraines in a month, it was horrific! I knew something had to change. I decided to try a gluten - free diet, I also went with NO preservatives / processed foods, MSG, etc of any kind. I still get migraines, but I now get maybe 6 days of migraines on a bad month. A huge improvement and going gluten free has also helped lessen my cronic joint pain.

 

[Ivan the Elder]

There is a connection between ovulation and the production of oxytocin. That then acts in the Corpus Luteum in the ovary which then produces Prostoglandin. Prostoglandin then affects the trigeminal nerves and causes dilation of the smooth muscles of the cranial arteries. That is a direct connection to migraine headaches.

Getting pregnant stops it for a while.... But then, so does anything that prevents ovulation since that prevents the production from the corpus luteum. Not so sure about the gluten angle. Most people that go gluten free tend to lose weight since it simply means it is more difficult to eat fattening foods. Losing weight usually helps most people, especially with joint pain.

Here is a good link:

http://www.medscape.com/viewarticle/528774_5

 

[RavenGirl]

@Evan , going gluten free didn't make me lose weight. I'm 5' 5" 115lbs. No weight to be lost. Not eating the gluten just made the joint pain less. Worked for my husband too and he had psoriatic arthritis.;)

 

[Ivan the Elder]

Nice to hear that it may have direct benefits. There is a lot that isn't yet known other than the simple fact that humans are not intended to be grass eaters. We don't have enough stomachs.

Incidentally, I have been truly gluten free since the late 80's, but I have real Celiac disease. Even a single crumb can put me in hospital.