My pain never goes away

Post your questions about pain management for our experts here.

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by Guest Posts on Wed Oct 14, 2020 1:52 pm

My pain never goes away

I have been living with chronic pain and chronic fatigue since i got bitten by a tick in 2013, I was diagnosed clinically with Lyme Disease as the blood test came back as inconclusive but I had the classic bullseye rash. Since then my health has deteriorated and I have been suffering from chronic pain, chronic skin conditions, and chronic fatigue.
I have seen several different Rheumatologists over the years and have been told various things from "its because you're overweight, go away and lose weight" to the classic Fibromyalgia diagnosis and wear and tear.
This year i have been lucky enough to have been referred to a Dermatologist for my skin which I have recently had a diagnosis of Nodular Prurigo ( I have had lumps and lesions ongoing for 6 years on my head, shoulders, arms.)... I had been referred again to a Rheumatologist by my GP as the pain I am experiencing especially in my two index finger first joints is unbearable...I yesterday saw a consultant who was extremely through and read thru all my notes and examined me and listened to my description of how the pain affects me... she has referred me for a full body MRI, hand ultra sounds on both hands, a chest x-ray and blood tests (my inflammatory markers are always raised). She said it is NOT Fibromyalgia because you would not have swollen joints and joint pain. I have extreme pain in my index finger joints on both hands, and all other top joints are sore and the one on my right hand is red, my knuckles are painful, my wrists, my shoulders. I have had lower back stiffness and pain and pain in my right hip for years. My toe joints are very painful and the ball of my foot and ankles, my ankles sometimes feel like the Achilles tendon is breaking when I walk which is so painful. My shoulders and chest hurt to touch. The pain and stiffness are worse in the morning and it takes me about an hour to get my mobility moving, and again in the evening. I’m kept awake with the pain even though i am taking Amytriptiline. I sleep with an orthopaedic pillow and an orthopaedic mattress yet the pain never goes away, it is SO draining and I have chronic fatigue because of the pain.
The consultant I saw specialises in Psoriatic Arthritis and was filling in for someone being off sick.... so I guess i was very lucky!
The pain and stiffness has worsened over the last 7 months and it is very draining.
Any input from your experts would be welcomed, or if this helps to raise awareness to others who may be suffering from what they think is Fibromyalgia.

Thank you, Jude
talkhealth team on behalf of a guest visitor

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Arthritis Action
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by Arthritis Action on Wed Oct 14, 2020 2:34 pm

Re: My pain never goes away

I agree completely. Fibromyalgia is often wrongly diagnosed and inflammatory arthritis which causes joint swelling and pain that is better with exercise, has to be excluded before making this diagnosis. Inflammatory arthritis, however, does not cause pain all over all the time or some of the other symptoms you describe, and I would suggest that you may have both conditions and would benefit from a multi-faceted approach.

Dr Wendy Holden
Consultant Rheumatologist and Medical Advisor to Arthritis Action
https://www.arthritisaction.org.uk/
020 3781 7120

Codetalk
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by Codetalk on Thu Oct 15, 2020 2:48 pm

Re: My pain never goes away

Living with chronic pain is exhausting. There is a frequent overlooking of how depressed people can become when living with a chronic condition, and it is estimated that a little under 50% of such people would meet the criteria for depression. However, it's not as much the diagnosis of depression that is the main issue but the recognition of it. Medication is available but perhaps what also needs to be thought about carefully is how you, the individual, responds to your conditions(s) and how you work your life around it. Pain leads to low mood, poor sleep, isolation, irritability and many others things.

As I mentioned under Fibromyalgia, using an approach that views you as a dynamic entity with a variety of factors playing a part in your life is important. Pain is not simply a physical thing but is exacerbated by your emotional states, physical movement, genetic factors, your social environment and so forth. Becoming more familiar with how you function as a person and seeing yourself as mind and body, rather than mind or body, is a good start.

Mindfulness, combined with an emphasis on your psychological make up and how you respond as an individual, has been found to be of significant benefit. This approach isn't a cure or medication, but it most certainly can help you negotiate your situation and help you work with your pain in a different or altered way. It really is worth giving it a try and persisting with it for a time. It's also worth reading up about pain memory as this is a frequently neglected area regarding chronic pain.

I hope this helps add a new dimension to managing your pain.

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Tracy Corbett
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by Tracy Corbett on Thu Oct 29, 2020 3:31 pm

Re: My pain never goes away

Hello, Jude
I would like to agree with both Dr Wendy Holden and Codetalk. A multi-modal approach is very important for patients with long-term painful conditions. To add to their comments, a referral to a suitably experienced manual therapist (a physiotherapist or an osteopath) might be helpful for you. Keeping moving is very important because as painful as movement is, stiffness from lack of mobility can make your condition worse. Your GP would be able to advise you on this.
Tracy Corbett
Chartered Physiotherapist

http://www.talkhealthpartnership.com/on ... orbett.php

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