A story you've heard before, with a twist!

I'm undiagnosed for the most part. I have a prolactin tumour, intercystial cystitis, IBS, cyclothymia but nothing that describes the amount of pain I'm in on a daily basis. I'm 37. I started using a walking stick, now I'm considering a stair lift and wheelchair. It's worsening every day. I work from home as a writer and marketing director and luckily just have to sit on my behind. It's when the children come home I struggle. The pain is in the coccyx and there's now internal bruising round the area. I have ANOTHER MRI on Friday, the last showed nothing and I cried. I also have pain in the pelvis (not hips, more ovaries) and that's what's stopping me moving most of the time. I've had 3 kids without pain relief (I never did get the medal for that, I should have taken the epidural) so I know how pain feels. This is worse. I take tramadol and dihydricodeine, paracetamol and ibuprofen and still it's too bad to be able to walk. Still I'm undiagnosed. This is not in my head. All smears are up to date- last bloods showed increase in liver enzymes, prob due to the painkillers. Does anyone have any insight into this mystery, you're my last hope.

5 Replies

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  • UW

    Your pain may continue to be a mystery, that's the nature of the beast.

    The upside is that there is a multitude of things you can do to minimize your pain.

    People who use this site have a wealth of experience and I'm certain they will step up if you want them to.

    Best Wishes

    Jim

  • No Insight. But there are things you can do to investigate what improves things and what makes things worse.

    Are you getting enough sleep? Pain has a tendency to reduce sleep. Getting enough sleep is important for the fine tuning of muscle control.

    Are you sitting down too long? You need to take a walking break every 20 minutes or so to prevent sitting problems. Muscles not used could over tighten. Over tightening muscles can cause pain and discomfort.

    Are you staring rather than keeping the eyes moving? Staring can cause muscles to stiffen. It is known in t'ai chi circles that if one part does not move all parts do not move.

    Do you sit upright and with head balanced on top of the spine? Or do you use muscle to hold your head? This will make a difference to the pain and discomfort you experience.

    It is worth seeing a McTimony chiropractor to see if there are any micro cramps in the back that can be removed. This will help reduce pain and discomfort.

    It is worth seeing an Alexander Teacher to learn about posture and muscle control.

    Last of all go to yoga classes to learn to have greater internal knowledge of your muscles.

    Hope this helps.

  • Long shot and clutching at straws here UW, but wondering if you might have Low Thyroid ?(Hypothyroidism)

    My reasons for thinking this is because when I checked out intercystial cystitis and thyroid I came across many Thyroid Uk members saying they had IC before diagnosis of Hypothyroidsm.

    IBS is a listed symptom of Low Thyroid.

    Cyclothmia - I looked that up too and know that Bi-polar, Baby Blues, Autism and many more all 'can' have low Free T3 blood levels (Free T3 is a Thyroid Hormone)

    Have you ever had your thyroid bloods done. ?

    Many get told their thyroid bloods are normal, yet they still have many thyroid presenting symptoms. Low Thyroid is often over looked.

    Having Low Thyroid can cause all over pain and tiredness also it can go hand in hand with vitamin B12 deficiency, low vitamin D, low iron etc..

    Coccyx Pain might be down to low or deficient vitamin D, not saying yours is, but my coccyx pain and stiffness and many more pains cured once on high (safe) dose of D3. Vitamin D is the sunshine vitamin.85% of us here in UK are low or deficient in vitamin D, I was and did not know it.

    Also you are on many prescription pills which all have multi side effects.

    Again just a long shot.

  • Could I be those pesky sacroiliac joints? That wouldn't usually show up unless asked for during a usual MRI. There is also radicular pain around that area. Extremely painful.

    Knowing the source does help one deal with the pain and knowing what is best for the condition and what to do to help rather than hinder.

    I do hope you find proper relief and the right diagnosis. Talking to someone in the medical field who is professional in the lumbar area Rheumatologists' they can request MRI for specific areas.

    Take care Jen x to

  • Have you ever heard about or considered about trying and Ganglion of Impar block? Maybe it would help you in your case. This injection is used to treat coccycodinia and other similar painful conditions like pelvic pain syndromes, cystitis, prostatitis and others. I have some part of similar issues like you and I am considering to try this myself.

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