August 5, 2019 at 11:25 pm #434950sensiblemothParticipant
Hi, I’m not sure if this site is still active or not, or if it will be the right place for me. Its quite lonely living with chronic illness. I feel deprived of connection, and many of my friends have left me or do not understand. I’m 18yrs old and just a couple months before my birthday I was diagnosed with CFS (Chronic Fatigue Syndrome). About a week ago, Fibromyalgia was added to my diagnoses. I am also a caregiver for my family, who are also sick with auto immune illness and etc.
I used to be as healthy as could be, despite the mental illnesses. I was never sick, so all this is fairly new to me. Its like living in a new body. Each day is a struggle, but I don’t let these dreadful things define me. Let’s see how this goes. 🙂
August 5, 2019 at 11:39 pm #434951Noki4Participant
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,
August 27, 2019 at 3:20 pm #434986Jack613Participant
I am new to this site as well. One to join an advocacy group and two to find help managing my conditions. I am a 45 year old male. I have spinal stenosis, a degenerative disc condition, bulging discs at the l3 and l4 as well as eroded SI joints.
Here is a little about who I am and when this all started. Back in 2007, I started to have some lower back issues and general discomfort and my primary care had referred me to a neurologist who conducted an MRI and advised I was not a candidate for surgery but noted stenosis, degradation of the spine and arthritis. As the years progressed, it became worse.
I have several things in my live that are very near and dear to me. My family, my music as I am a concert organist, my farm, my job and being active in my community. In 2013/14, I nearly lost them all because I couldn’t manage the pain. I couldn’t sleep at night, I withdrew from everything. My wife separated from me, my employer told me that I needed to get help or I would need to move on, my world was collapsing.
I was introduced to a pain management specialist who assisted me through a myriad of trials before we ended up at a combination of spinal injections and medication to control the pain levels and it worked. Fast forward to 2019 and my specialist has been diagnosed with cancer and I received a letter from the practice advising that because he’s not going to be returning, all of his patients are being asked to return to their primary care patients for treatment or referrals.
Here is my dilemma. I am on Hydrocodone 5/325. It is a low dosage opioid but that combined with the injections works. When I asked my primary care about this, he advised he would try but is not an opioid prescriber which I was okay with so he prescribed Celebrex which I can not take as I’ve had gastric bypass and anyone with that procedure is precluded from any NSAIDS ever again, Gabapentin gave me a seizure, Topiramate gave me aphasia. What’s funny is, my pain care physician asked me about prior surgeries and I told him about the weight loss surgery and he knew NSAIDS were out, I told him there is a history of seizures in my family and he said that Gabapentin likely wouldn’t be a good fit either.
Now he’s gone and finding a pain care specialist is impossible when they find out you’ve been treated in the past and have a care plan that involves opioids. I have a huge scarlet letter. Four years ago when they were prescribed to me, I entered into a contract with my provider and there was a risk management plan that involved urinalysis to determine usage of the prescribed medication as well as any other illegal substances or prescribed medications. In short, nothing has ever been an issue.
All I can do now is watch my life slowly crumble around me as the pain creeps back into my life with little to nothing I can do as far as management.
Doctors are so terrified by the imposition of this opioid epidemic that the patient is being cast aside. The hypocritical oath means nothing anymore. Do no harm means no harm to your patients, not your self. You’re hurting us more but not treating the condition and making us feel like outcasts than patients with legitimate, documented medical conditions.
August 27, 2019 at 10:32 pm #434987sensiblemothParticipant
There is a significant lack of understanding among doctors (and the public in general) about opioids and pain medication, and it is saddening and detrimental to lives of those who truly need it. I apologize that you have to face this stigma. It is a crisis that is not being acknowledged and its affecting many people, including one of my family members who live with chronic pain and other diseases.
I respect the medical field greatly, but I have seen how the ignorance of doctors can cause damage. Keep fighting, no matter what. It is important to do research and be prepared during doctors appointments, because sometimes it can be a battle when all you are asking for is help. I hope you will be able to find some relief and care soon.
November 1, 2019 at 1:25 am #437491stellajames34Participant
Welcome aboard dear.
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