Chronic Pain members - Welcome, please introduce yourself

HI, my name is Lisa and I have lower back issues, stenosis, osteoarthritis and disc degeneration on multiple levels. I have been managing my pain with CBD and topical creams, and take Tylenol. I am allergic to naproxen and Ibuprofen makes my Tinnitus alot worse. I am in Canada so CBD is legal, but I have a doctor and a prescription for it. My hip muscles have been getting weaker and they are stiff making it painful to walk but I still get out there, and I do exercises that the Physiotherapist gave me, I am 64. I am trying to get a diagnosis as to whether this hip issue is related to the lower back of it it is neuropathic or Fibromyalgia, I also have foot pain for the past two years. My doctor sent me to a pain clinic, and the doctor prescribed Lyrica, I am drug sensitive so was afraid to try it before talking to my regular doctor. Also I am trying to lose 20 pounds and do not want the weight gain. My doctor prescribed Desipramine 10 mg. I looked into that and see that it can increase the risk of dementia which runs in my family- Mom has it. So I am scared to take the desipramine too LOL. I am here on Connect to learn from others and get ideas - for now my pain is at night, during the day I am good unless I do something to aggravate it such as walking uphill as that uses the hip muscles more. I have another appointment with my doctor next week and i will discuss, I am going to ask to go see the neurologist again so he can refer me.

Hello @lisa12 and welcome to Mayo Clinic Connect. I appreciate your post. I am sorry to hear of your multiple disorders that result in so much pain. It sounds as if you are working to be seen by a good medical team to determine the source of your pain. It is important to be your own advocate.

I'm wondering if you have access to a pain clinic or a pain specialist in Canada. Mayo Clinic has a great pain clinic program but I'm not sure if your Canadian medical plan would cover that.

I would like to invite Rachel, @rwinney, to this discussion. She is somewhat an expert on Mayo's pain clinic, having attended herself. Perhaps she can share some of the things she has learned if you cannot attend the Rochester, MN clinic.

HI Teresa, I did go to a pain doctor here but he just looked at my reports and prescribed Lyrica. I feel that I need to get a proper diagnosis. I grew up in Chicago and then lived in Florida for 20 years before moving to Canada. I know that the Canadian plan would not pay but I would love to go to Rochester. My younger sister actually went there when we lived in Chicago because she developed erythema nodosum. She has nothing but good things to say about Mayo Clinic. I am going to try to get more help here but will add Mayo Clinic as an option. Thank you!

@lisa12
Hi, Welcome to Mayo Connect.

I pretty much have the same conditions as you throughout my back.

I have had morton neuromas in my foot. They caused me to limp.. which caused my bad back to hurt more. I had surgery on my foot and without limping my back … and hip were better. Then another neuroma appeared a few years later. I went to a different podiatrist in another town.. an hour away. An MRI was done to discover another neuroma ( it was small) . . my former podiatrist kept saying he was going to order a MRI. Instead he did injections. I was tired of that. The new podiatrist ordered physical therapy. My therapist was good. He used dry needling and some torture tools to help me. He had me walking well within 3 weeks. .. This is a domino effect of pain… one pain can cause another.

My back started hurting again a couple of years ago. The pain was below where I had surgery twice before.. LS joint. The pain was achy, stabbing, electrical, tingling, burning… you name all the adjectives that describe pain and that would cover it. It kept getting worse. There would be a sharp pain in the groin too.. it seem to come from nowhere.. I feel fortunate not to have it hit when in public. Sometimes it felt like my knees or hips would give out.

I went to my pain specialist and referred to my notes… and he started telling me what I had not told him yet of my symptoms. He says he knows the cause but has to do a couple of injections to be sure. The first one helped for about two weeks and the next one about 6 weeks. His words were that I had sacrum dysfunction. It is better known as SI joint dysfunction (sacroiliac joint dysfunction).

My doctor .. the pain specialist… did a SI joint fusion at the end of April. He drilled a hole… stuck a piece of bone in the hole he drilled and the bone graft usually completes within six months. I was awake the whole procedure that took less than an hour and went home afterward. That pain is gone… I am walking differently now… better. The doctor had to pull some muscle out of the way during the procedure. So there is muscle pain in my buttocks and in my leg. It gets less and less each week.

I am not saying that SI joint dysfunction is your problem. I am saying It is worth having it checked out if it hasn't been checked already.

I am chemical sensitive .. so I too am limited on what I can take. I seem to do well on Oxycodone. I only take what I need… 2 to 5 pills a day. Depends on my activity and the weather. It surprising dulls my brain very little. Most opioids/narcotics give me a horrible headache and nausea. So I was surprised. I use a moist .. microwavable … heating pad and then arthritic cream to get me through the night. Heat again to get me started in the morning. I use a pillow between my knees when I sleep. It takes getting used to and time to find the correct pillow for you. I started out with a travel size pillow and now use a thin, soft standard bed pillow. My x-tra large son who is 6’ 4” tall uses a body pillow… specialty pillows are for most a waste of money. I use a flannel pillow case on my pillow.. seems to help keep it from sliding.

Right now I am limited on walking, but walking and other gentle exercise helps with the pain. For back pain you need strong core muscles… so seek out those exercises. As you know exercise is good for the mind as well as the body. If you think you might need an anti depressant talk to your pharmacist about which one might be the best one for you… and which will be okay to use with other medications you may take. Most doctors do not know a lot about the medications they prescribe and do not have time to research which one is best for their patient.

Remember always that you cannot make others happy and they cannot make you happy. Others can contribute joy to your happiness and we can contribute joy to other's happiness. You are in charge of your own happiness… happiness is not to be sought after it is to be created. It is a difficult thing to accomplish when you are in pain all the time. Create your happiness by doing activities that bring you joy and have people in you life that bring you joy. Do simple things like smile at someone, opening a door, saying good day. … Giving joy to others will bring you happiness.

One of the best things you can to quell pain and calm the mind is to just breathe. Make sure you breathe with your diaphragm. My thoracic surgeon told me to blow out birthday candles every day… several times a day. There are many videos on the internet on how to breathe properly… some are a little differnet than others. Blowing out birthday candles work for me 😃🌬 I'll soon have 70 to blow out.

I hope some of my ramblings help you in some way.
ZeeGee

Hi ZeeGee, this is awesome information. I will check out the SI Joint dysfunction for sure. I never heard of the morton neuromas, I am going to look that up too. When I went to the podiatrist he told me that he suspected that I have an entrapped nerve. The exercises that I have been given by the physiotherapist are for my core mainly and also exercises for my hip muscles. I do feel better in the morning after I do the core exercises which I am going to do now! I will try the pillow also- my husband uses a body pillow but I prefer a smaller one. It is late here so I am going to read this again tomorrow-I really appreciate the info! I also do heat in the morning to get me going! And the suggestions about happiness, the little things for me are the best, I like the idea about the candles!

I recently retired. I like to do things to take my mind off of the pain, which luckily I do not feel so much during the day. I started going back to work as my manager called me and asked if I could help out. I do 10 hours a week. She is going through alot also and she got evaluated for pelvic floor dysfunction, she woke up one day and could not get out of bed, and could not bend her knees either. I am going to share this information with her too, Thanks again and have a good night!

Lisa

@lisa12

Lisa,

SI Joint dysfunction and pelvic floor dysfunction can be related. Doing PT.. pelvic floor exercises can be helpful with both.

I put off getting help while taking care of my mom. Taking care of her took a toll on my body. The physical pain that I have endured is worth the time I had to spend with her. She passed away August of last year. I have taken the time from when we had to put her in a nursing home January of last year until now trying to repair the damage to my body. I have more to do, but getting there. One day at a time.

My husband and I inherited my mom's dog.. a mini-poodle named Ziggy. He will be 11 in September. He is still healthy and spry. He is a great gift that uplifts the spirit. I shed a lot more hair than he does. 😁

I hope all goes well with you and your manager.

Sometimes I miss work (retail), gardening, and a few other things.. but mostly photography. Taking photos with a phone or tablet just is not the same as a real camera. Attaching a photo of Ziggy to bring you a smile. He needed a good brushing and a haircut.. the same now.

ZeeGee

Hi ZeeGee,

Ziggy is so adorable! he is smiling! I am glad that you took him in, he looks like a joyous boy!
I am sorry about your Mom, that must have been very hard, time to focus on yourself now to heal.

I went to see my Mom today, she has dementia and is in a nursing home since 2018. She is 97-my Dad goes to see her 3 times a week. She knows who I am, sometimes she calls me by my name too. Most of the time I cannot understand what she is saying because of the dementia. We have a very close bond partly because we both are artists. I take after her in alot of ways. It is hard to see the mental decline, but we are getting through it.
She has done some beautiful paintings! We are donating some to a museum in Cape Breton where she was born.
I have numerous paintings of hers and also some of my own! I have not painted for awhile and I need to start again.
It is therapeutic.

Mom speaks French sometimes which is her first language, and then some English. Most of the time I do not understand anything she is saying, but then there may be a sentence that comes through. She is happy though which is most important. That is great that you love photography, I understand what you mean about the phones and tablets, they are not the real thing.
Here is a photo of one of my Mom's paintings of Cheticamp, Cape Breton!

Lisa

Oh my, @lisa12. I love Cheticamp and Cape Breton. My family are Acadiens too, from New Brunswick. A most cherished book of mine and my daughter is "Les Vacances de Claire" illustrated by Rajka Kupesic. Your mother's painting brought back lovely memories for me.

Should you wish, you can also follow the caregivers group
- Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/

Hi @lisa12, welcome to Connect. I'm sorry to read of your chronic pain. It's very difficult not knowing how to manage multiple symptoms, and figuring out the causes of such. It sounds like you are being proactive, and seeking answers and solutions. I love that!

As @hopeful33250 mentioned, I graduated the Mayo Clinic's Pain Rehabilitation program last October. I too, have multiple symptoms and live with chronic pain from neuropathy, migraine and central sensitization syndrome (CSS). I, like you, tried many medications, creams, injections, therapies and treatments over the years. I had many tests and saw many specialists. It became clear that I was spinning my wheels and becoming worse, both physically and mentally.

I was relentless in my search for help (not always a healthy thing, but it worked this time around 😉). I needed a plan to learn how to obtain acceptance of living with chronic pain and symptoms, direction for how to properly use and treat both my body and mind. I wanted to get off opiates and all other unhealthy medications. Through my research I found Dr. Sletten's video on central sensitization syndrome. I was amazed at his clear definition of the chronic symptoms I experienced. After defining the science, he defined a promising path forward...Mayo Clinic Pain Rehabilitation Center (PRC).

Here is a link to his presentation:
https://www.youtube.com/watch?v=8defN4iIbho

And here is a link to Mayo's PRC:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

@lisa12 I understand you live in Canada and its challenging to get to Mayo Clinic. Nonetheless, if the videos peek your interest and you are further interested, I am happy to share my experiences and knowledge. What is your biggest goal in terms of living with chronic pain and symptoms?

Hi, I'm new to this site and apologize in advance for any "faux pas" regarding protocol. I have been suffering from sciatica since 2014 and have had numerous epidurals and RFAs after physical therapy p[roved unsuccessful. In 2019 a laminectomy was performed in the L5-S1 region which was also unsuccessful. Last April my pain management doctor (an anesthesiologist) attempted an SCS test . In doing so, he irritated a nerve and the test was aborted after five days. (The doctor claimed he had to circumvent scar tissue which resulted in the irritation.) Now the nerve has settled and the doctor is recommending a surgeon attempt the trial. Obviously I'm concerned and am reaching out to those who may have had a similar experience. Any feedback will be appreciated. BEAU238