Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@susiequ

Hi, I am new to the group and I suffer with chronic pelvic pain and have been for the past five years. I’ve seen every doctor imaginable and have had every test done you can think of. I have seen 2 pt who specialize in pelvic pain, but nothing seems to last more than a day. Anyone else suffer from this horrible disorder?

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@susiequ Welcome to Connect. I’m glad you joined us. Could you share with us what you have tried for relief of pelvic pain? Has any doctor given you a diagnosis as to the cause of the pain?

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@susiequ

Hi, I am new to the group and I suffer with chronic pelvic pain and have been for the past five years. I’ve seen every doctor imaginable and have had every test done you can think of. I have seen 2 pt who specialize in pelvic pain, but nothing seems to last more than a day. Anyone else suffer from this horrible disorder?

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I have been diagnosed with Chronic Pelvic Pain Disorder. They say it is caused from stress, but I am not 100% convinced that they have the right diagnosis. I live with a heating pad that gives me very minimal relief and soaking in hot bath offers relief for the moment. I take pain killers to take the edge off, because my pain level is at a 10 most days. Over the counter pain relievers don't touch the pain. Any physical activity such as: exercise, bending, and any type of housework increases the pain level. It is like have severe menstrual pain x 10. I'm thinking about trying physical therapy again, but the out of pocket cost is more than my budget will allow.

—- Mayo Clinic Connect wrote:

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@susiequ

Hi, I am new to the group and I suffer with chronic pelvic pain and have been for the past five years. I’ve seen every doctor imaginable and have had every test done you can think of. I have seen 2 pt who specialize in pelvic pain, but nothing seems to last more than a day. Anyone else suffer from this horrible disorder?

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@susiequ I have often said that if I could take a constant hot shower or soak in a hot bath all day then I could function! I hear the frustration you have with the pain and your doctors. I have fibromyalgia, chronic neck pain due to stenosis and degenerative disc disease (DDD) I had a hysterectomy in 2013 and now get random attacks of pelvic pain. It feels like my pubic bone is going to break and I hurt all the way up to my belly button. Like you I turn to the heating pad The relief isn’t great but the warmth is comforting. I’d like to refer you to a discussion in Womens Health. http://mayocl.in/2qpFhbQ @amwein is seeking support for her daughter who suffers from endometriosis and pelvic pain. You will also meet @michellecrcrn
Have you ever tried massage therapy? I find it so frustrating that supporting treatments such as massage therapy and acupuncture are generally not covered by insurance yet with pain killers provide longer relief of pain.

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@susiequ

Hi, I am new to the group and I suffer with chronic pelvic pain and have been for the past five years. I’ve seen every doctor imaginable and have had every test done you can think of. I have seen 2 pt who specialize in pelvic pain, but nothing seems to last more than a day. Anyone else suffer from this horrible disorder?

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I had bladder pain one time. I don’t know if that’s different from a pelvic pain. A eurogynocologist helped me a lot. He did a procedure to relax the bladder. And I was taught skills to relax the bladder. I have not had the same problem for a long time. I don’t know where your pain came from.

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Hi I am Joan and I am sorry to hear that you suffer so from chronic pain. My pain is not from pelvic problems but pain is pain and horrible to have to live with. The important thing is to find out the cause. Did you have any kind of an accident that started a “flair” of pain? Anything from your past (any injury) made worse by something that recently happened to you like pelvic surgery, IBS, “leaky gut” syndrome from gluten products?
Mine is from lifting a patient causing the need for spinal fusions (nerve damage and scarring of the nerves). Did any radiograph studies come back with questionable areas? I am sorry I can’t give you any answer. My granddaughter had her appendix out last summer and the doctors stated it wasn’t that bad. WELL her abdomen hurt terribly and for 2 MONTHS post-op, IT hurt and was VERY tender. The x-rays were all normal and her physical exams negative. They were not sure. Then they thought it was an “abdominal” migraine because she had a migraine headache that was starting.
Shortly after, the abdomen became better, tincresing cervical migraine (unrelated to abdomen) and she started with vision problems in her one eye (could hardly see). Hershey Medical Center stated she contracted Cat Scratch fever that affected her brain causing the headache and eyesight last Sept. To this day she has occasional HA and some loss of vision nasally which probably will improve. That is why I asked if you has an insult prior that is affecting you now. Apparently, after her abdominal surgery, this bacterial infection was brewing and no one knew until it became more symptomatic. I don’t want to scare you…I am just saying…think of anything in the past…and relate it to what might be going on now. Hope you find you answers and get help for your pain.

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Hi my name is Roland an active 76 yr old male. My pain comes from having( PMR) Polymyalgia Rheumatica. I developed this in mid March 2017 this came out of no where, there is no cure for it but it is managed by the correct dose of prednisone. I’m still trying to find the correct dose.

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Hi I am Joan. Sorry to hear you are going through this. Prednisone is very good and I hope will help. It might need some adjustment but I am sure if you have a rheumatologist, you are in good hands. I use it for occasional flairs of my chronic pain or fibromyalgia…only low dose and infrequently. It is like the cortisol we make, but not enough when we have a “problem”. Hope you are starting to feel better with the weather getting nicer outside. Weather changes often affect people with chronic pain.

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@rolandhp

Hi my name is Roland an active 76 yr old male. My pain comes from having( PMR) Polymyalgia Rheumatica. I developed this in mid March 2017 this came out of no where, there is no cure for it but it is managed by the correct dose of prednisone. I’m still trying to find the correct dose.

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Hi Roland, I’m 74 with PMR and small fiber peripheral neuropathy. The PMR does come out of nowhere. Hopefully it will go into remission soon and you will be able to taper off of the prednisone. From what my rheumatologist told me it is a disease that can come and go…and come back again which it did in my case.

Hoping for a short occurrence for you so life will go back to the norm.

John

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I don’t know where to start, other than saying that I have been “here” (in chronic pain land) for longer than I realized. I’ve had headaches since I was 10. At first they weren’t chronic, but at some point over the years they have become an almost daily occurrence. I have a diagnosis of chronic migraine. I am not a candidate for the typical daily preventive meds as I have ridiculously low blood pressure. I have been using Botox for about 6 months now. There is a slight decrease in pain days but it has not been stellar. My forehead does look fabulous though 😉
I’m not sure that the migraines are actually typical migraines, or if there is something else going on. I definitely know that the occipital nerve is involved by the location and type of pain that I experience. But I also had an MRI done before receiving the Botox- they found numerous tiny white matter foci, and a lot of demyelination. To add to the back story, I have recently had difficulty with the vision on my right (intermittent blurry- have to close it and use my left instead) and great difficulty swallowing. The pain is crushing me, and to be honest I’m a bit scared. Do migraines typically change over time or am I missing something? I’m stuck waiting in cue for a neuro. The family doctor is not helping at all. Is there anybody out there like me?

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@rolandhp

Hi my name is Roland an active 76 yr old male. My pain comes from having( PMR) Polymyalgia Rheumatica. I developed this in mid March 2017 this came out of no where, there is no cure for it but it is managed by the correct dose of prednisone. I’m still trying to find the correct dose.

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Hi John well today 17 May an extremely bad day woke up in pain & it has persisted all day both shoulders in particular. Called the Dr. & he told me to come in & he conferred with another Dr. I was put back on 20mg/ prednisone day plus oxytocin to help ease the pain will take that at bed time. Hope tomorrow is a better day. This PMR is really getting to me I usually have a good afternoon but not today it has been persistent all day long. As you know this is a head scratcher it’s like shooting darts in the dark.

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@rolandhp

Hi my name is Roland an active 76 yr old male. My pain comes from having( PMR) Polymyalgia Rheumatica. I developed this in mid March 2017 this came out of no where, there is no cure for it but it is managed by the correct dose of prednisone. I’m still trying to find the correct dose.

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Hi Roland, I’m really sorry to hear you are in so much pain. I know it’s really difficult when you can’t get any relief no matter what you do. I’m hoping they can help you get the pain under control. Hoping that tomorrow is a much better and pain free day.

John

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@rolandhp

Hi my name is Roland an active 76 yr old male. My pain comes from having( PMR) Polymyalgia Rheumatica. I developed this in mid March 2017 this came out of no where, there is no cure for it but it is managed by the correct dose of prednisone. I’m still trying to find the correct dose.

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Hi Roland – I’m on my 3rd week at 5 mg and was doing pretty good until this morning. I’m feeling some stiffness and pain in my shoulders and arms. Hoping you have a pain free day today. John

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@susiequ

Hi, I am new to the group and I suffer with chronic pelvic pain and have been for the past five years. I’ve seen every doctor imaginable and have had every test done you can think of. I have seen 2 pt who specialize in pelvic pain, but nothing seems to last more than a day. Anyone else suffer from this horrible disorder?

Jump to this post

Chronic pelvic pain can be from numerous issues. Endometriosis, adenomyosis, scar tissue, interstitial cystitis, ovarian cysts, bowel issues such as IBS or constipation. I suffer endometriosis and have had years of drs who put it down as cramps. It took me 20 years for a dx. Laparoscopic procedure was done and that is the only way to dx endometriosis- adenomyosis is uterus. How are your menstrual cycles? Thyroid? And yes the thyroid can even cause havoc to female issues. The endocrine system is all connected.

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I haven’t posted much lately as I’ve been experimenting with different non drug pain relievers. I am in Missouri this week visiting our friends and going to an Amish wedding. Previously we owned a bed and breakfast inn here (for 16 years) and had one guest who visited for many years about 5 or 6 times a year. I only knew he did some work with the Amish while he was here, but I didn’t know what. We sold our inn 2 years ago, and moved to California. We’re staying at the inn this week and It just happened that our former guest, Jim, and his cohort, Jan, were also here. I was talking to Jan and mentioned my chronic pain. She then told me that she and Jim work on the Amish for pain. Jim and Jan do cranial, muscle release, and myofascial therapy. She offered to see if she could help my situation, and I accepted.

Oh my gosh, she worked on me for 30 minutes and the relief was almost instantaneous! My right leg, hip, leg, and ankle had nearly complete pain relief! They called the next day (yesterday) and offered to do more and I accepted again. They both worked on me last night doing cranial and TMJ corrections and just holding certain muscles. I can barely believe the complete change in my posture, pain relief and feelings of joy! This is the only thing I have done that has released me from the grip of constant pain in my right hip and leg! I am so happy. When I get back to California, I will look for therapists who can do Muscle Release and Myofascial Therapy so I can continue this kind of therapy. Amazing!

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HI everybody, I wanted to give everyone an update to my appt. at the Doctor the other day. He is a DPM. With I did not really kmow when I went there but I think he really knows what he is doing. Surgery for Neuropathy never even came up. Here is what he has started me on: L-Arginine 900 mg 3 times per day between meals, Magnesium 400mg 1 time per day. (He told me that you only need to take Magnesium if you are having a lot of pain with your neoropathy.) and Alpha Lipoic Acid 600 mg per day 3 times per day. And then he wrote me a prescription for sterioids mg. And then I am going to get about 7 blood work test. He wants to check my hormones. He also did a nerve block injection into one of my ankles to see if it would respond. It hurt like heeee..And it has not. So, he will probably put me on hormones. And then we will go from there.

He did mention something really quick about my foot drop that he could fix by doing an Ankle Joint Fusion. We only talked about it for a few minutes since I was mainly there for my neuropathy. He told me it would be just like not being able to wear my braces. My foot would stay in the same place all the time. I will talk to him more about that next time, because I had never heard of that. Has anyone of you ever heard of that or had it done?

I saw somone mention DMSO. I did hear that it could be good cream for your feet if you have neourpathy. I ordered some and will let you guys know what I think.

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