Briefly I had a surgery in early February and haemorrhaged afterwards. My left keg became very stiff and uncomfortable which quickly escalated to a limp, followed by severe pain and stiffness.
I have seen four GP`s, rang Rheumatology seven times, referred myself to the MSK Team, been admitted to the Medical Assessment Unit, seen a physiotherapist , seen my Rheumatologist, been seen at the pain clinic. Aside from a Doppler and blood tests each specialism has bounced me back to the other. I can hardly weight bare, I am falling frequently and covered in bruises, I cannot sleep and despite the increase in mst to 10 mg twice daily the only thing that takes away the pain and allows me to walk is a course if steroids.
I am losing my hard earned independence as getting in and out of the car, up steps and even on and off the loo is enough to make me scream. The Rheumatology Helpline Nurse told he today they will nit give he more steroids and DMARDS are out of the question because my bloods are normal. I am drowning in despair, sleep deprived, my BP is high and I cannot tolerate this pain. My whole lower leg is stiff, slightly swollen, my leg will not bend, my tendons are on fire, my kneecap is hot.
I have even had eight sessions with a Chiropractor who says by fibial head is stuck, my ITB is so tight it is pushing on my arthritic knee, and she simply cannot continue to take my money when she cannot help me.
Has anyone had pain this bad and not had significant inflammatory markers. I have just sat and cried again after being told that I won’t be seen in clinic until November by my Rheumatologist. My GP said on Tuesday that even if I had a total knee replacement ( I have been on the list for 8 years and never been well enough or gained too much weight due to inactivity) my pain would not resolve as clearly because the steroids work the issue us inflammatory. I am it seems nobody’s problem.
Written by
CecilyParsley
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The pain you are in sounds dreadful and I hope you find some relief soon as that must be very tough for you.
I have to say, whenever I have experienced anything like the kind of pain you are describing, it has been associated with a elevated CRP inflam. marker.
Day-to-day I do have the more typical Behcets symptoms of joint aches and stiffness, ulcers, pustules, fatigue etc and my inflammatory markers are NOT elevated. Its part of the reason it took so long to get a diagnosis. The joints also look normal even when they are stiff and aching like hell. However, if I have visible inflammation where the joint is red and warm to the touch (this happens occasionally), then my CRP marker is elevated.
Even though my inflam. markers are usually normal, my Rheumy diagnosed me with Behcets based on my symptoms and has put me on Azathioprine and Colchicine. I don't think this is that unusual for Behcets patients. It seems like localised inflammation of the small blood vessels may not show on the CRP inflam. test.
From your description it sounds like a few problems are combining and aggravating each other. Perhaps ask your GP for the steroids or pain management to get you to the Nov. Appointment?
Waiting in queues is not fun when you are in pain.
Thank you so much for responding Ayea. Honestly I have been struggling so badly with severe pain and I am sleep deprived. I am really concerned that my long fought for independence is fast disappearing. I need help with everything now as bending is hell with a stiff leg that will nit bend. I have developed hip and back pain with sciatica from my odd gait too. I just feel pushed from pillar to post with no one really accepting responsibility to sort it out. I am not someone who troubles my Doctors or is bad tempered by nature but I have begged them for help. I feel if this continues I will be even more obese and in a wheelchair. Trying to exercise is impossible as I am falling a lot, resting is difficult because if pain. Heat , ice, accupuncture do not help either. I have tried everything I know.
Lots of people on the Lupus site tell me they have inflammation detected by scans despite blood markers being normal so I am going to ask my GP for a scan next week. I truly hope she will agree to it.
Thank you again for sharing your experience, much appreciated.
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