[Noki4]

Kelly65,

I am sorry to hear all of this. Living with pain is hard and sometimes those around us don’t understand. Feeling isolated is one of the big things that we live with on our journey of pain.

I will be here for you all that I can if you like.

Gentle hugs
Noki4

[Noki4]

Clementine,

Can you maybe go see a primary care doctor, that can maybe order a group of tests to find the answer that you need. I do hope you are able to find the help that you need.

Noki4

[Noki4]

Hi,
Living with chronic pain and illness is hard, it is lonely and so much more. I started my pain journey when I was 24 years old, it took 3 years to get the right diagnosis, so don’t give up on getting to the right dx.

Pain changes our lives and sometimes the people around us. The forums here on The Pain Community website is good place to talk to others. There is also a group on Facebook that supports The Pain Community, it is called “Friends In Pain: Surviving Chronic Pain Together”. I will put the link below for you.
If you decide to join the Friends in Pain Facebook group please let them know that Noki sent you so I will know it is you, I enjoy making new friends and look forward to getting to know you if you like.

https://www.facebook.com/groups/236329823140204/

Gentle hugs
Noki

[Noki4]

Hi,

Welcome to The Pain Community discussion forums. First let me say you are not alone. We do understand a life of chronic pain and how lonely it is. I was 24 when my pain journey started and that was a long time ago however I know exactly what you are saying. I was a young mother of 3 kids when my pain started. It is hard to be a caregiver for those we love when we ourselves are living a life of pain.

Here at The Pain Community (TPC) they have some great ways to interact with others who are on a journey of pain so we don’t have to feel so lonely.

They have these discussion forums which are great. They also have hosted chats, Monday, Wednesday & Friday’s at 11am ET here on the website in the group chat room.

They also host a support conference call every Tuesday and it is a fabulous way to talk to others who truly do understand and also a great way to make new friends that you can build a friendship with and talk too outside of the once a week support calls.

There will be a support call tomorrow, August 6th at 1pm ET, 12pm CT, 11am MT and 10am PT. You do not have to register, you just call in at the time of the call and everyone gets to talk on the call if they wish. There is a host but she invites everyone to talk during the call. Here is the phone number and I will find the link to share where you can read more about the calls.
When it is time for the call, just call in using this number: 712-775-7031 Passcode: 491-268-096 and press the # key.

There are great folks on the calls who enjoy meeting new folks and making new friends so the lonely isn’t so lonely anymore.

Here is the link so you can read more about the calls. https://paincommunity.org/tpc-outreach-support-conference-calls/

I hope that you will give these different ways to interact with others here at TPC a try and that you find them as helpful as I have.

My best to you,
Noki

[Noki4]

Hello Carolyn,

I am sorry for the loss of your daughter. I feel like most people who live with health issues ask the same question you are asking. I am 55 and have lived with pain for half of my lifetime. I raised three daughters and now have grandchildren. I think for me it was the will to raise my children and now it is the will to live for my grandchildren.

Faith has played a part for me and distraction has played a huge part. I find things I can do and jump in feet first and immerse myself and try to tune the pain out even if just for a little while.

It is a hard life to live with 24/7 pain and it is hard on those around us. They want to help but don’t know how or what to do and then frustration kicks in on everyone.

Please know that I am here to talk with you.

I also have found the support calls that The Pain Community offers every Tuesday to be very helpful.
I will share the info here in case you would like to give the calls a try. The people that are on the calls are so supportive and compassionate.
The next call is July 30th at 7:00pm ET.

My best to you,
Noki

TPC Outreach Support Conference Calls

[Noki4]

Ravennah,

I am sorry to hear that your pain issues have continued. Maybe see if you can get in to see a pain management provider and see if they may have some answers.

My best to you,
Noki

[Noki4]

Natalie,

You wrote what I think every pain patient has repeated over and over again. There needs to be a way that we change the stigma against patients. We have been lumped in with those fighting addiction and like you said we are addicts, we only want to live as best we can.

I don’t have the answers, I keep advocating to those that will listen and educate them that we as patients and those who are addicted are two totally different groups and should never, ever be lumped together.

My best to you,

Noki

[Noki4]

I was diagnosed about 12 years ago with ankylosing spondylitis. My journey started out with degenerative joint disease and as damage was done through the DJD and osteoarthritis and a few other diseases & conditions I received the ankylosing spondylitis diagnosis.

The exercise is what I have found helps the most to ease the pain and help me maintain flexibility and to keep the flairs at bay. Of course there are times no matter what I do the flairs hit. When the flares hit I use heat and ice and nonsteroidal anti-inflammatory drugs (NSAIDs) but I have to be careful using the NSAIDS because they can cause stomach issues.

For me it is doing whatever I can to keep the inflammation, pain and stiffness to a point I can tolerate it and that is where the ice, heat, and exercise come in to play. I have found soft yoga to be a big key in keeping the stiffness low.

Due to my other diseases and conditions I am on several medications but have found Meloxicam (Mobic) to help a great deal.

I totally understand about trying to figure out if it the fibro or the ankylosing spondylitis. When you have multiple illness or conditions it makes it hard to know which one is acting up and causing the increase of pain.

My best to you,
Noki4

[Noki4]

Hi TightHope,

We are happy to have you join us here at TPC. Cooking is one of my least favorite things to do but these recipes shared here are great.

Noki4

[Noki4]

Hi Ray Ray,

I live with ankylosing spondylitis. One thing that my doctor has always insisted on is that I keep as active as I can because it can help with the pain. He is also always reminding me to pay attention to my posture.
My best to you and I look forward to speaking with you.

Take care,
Noki4

[Noki4]

Jhonsontic,

I don’t see why you can’t use a massage chair at home. I use a massage thing that lays in my recliner to help ease my aches and pain. Have you saw a doctor about the knee pain so you know what you are dealing with?

My best to you,

Noki4

[Noki4]

Hi TightHope & D,

It is nice to meet you. I have lived with arthritis for over 25 years. It started in my early 20’s. The best thing I found for me was to educate myself about the medical treatments that could offer me pain relief and ways to live with arthritis. It stinks to have it come on us in our younger years.

I look forward to sharing our journeys with each other.

My best to you and know you are never alone 🙂

Noki4

[Noki4]

Hi Leemac,

It is nice to meet you, wish it was under different circumstances. I am not a medical professional however I think it would be best to talk to your doctor about the hip pain. I have degenerative joint disease and it affects all the joints. I am thinking your doctor may probably start out with x-rays or and mri of the hip to see what is going on in there.
My best to you,

Noki4

[Noki4]

My insurance company forced my doctor to change the treatment plan that he has had me on for over 20 years. It just isn’t right that someone sitting in an office can tell a medical professional what he can or cannot do. After all he/she is the one that went to medical school and has the best knowledge of what is right for his/her patients.

[Noki4]

Hi Confused Me,

I have never had braces but one of my children did. When she first had the braces put on, she did have some pain and discomfort. I was told when I consulted her dentist that it was normal and that the pain would ease off after a few days. She was told she could use over the counter pain relievers as needed (please consult your dentist before using any over the counter medications).

She did not eat a lot for the first couple days, she mainly used cold drinks, milkshakes and ice cream seemed to help give her some relief.

I was told that if the pain did not ease off after a week then I was to contact the dentist again. She did still have some pain and discomfort and so I took her back 5 days after the braces had been placed and they found one of the placements was not just right and that it was causing pressure on one of her teeth and that was the cause of the toothache.
You could talk to your dentist and see if this could be a possible cause if the pain does not ease.

I think it is normal to be a little upset and angry when we have something done that is to better our lives and then we experience pain. I can only share what I have used for my own times of anger and that was to breathe through the anger and to allow myself to meditate a few minutes and allow the moment of anger to pass.

I hope this will be helpful for you and that your pain eases very soon for you.

Take care,
Noki4

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