Difficulty getting a diagnosis?

Posted , 6 users are following.

Hi all,

I'm completely new to forums of any kind but I'm lying here in so much pain I figured I'd take my mind of it, here goes.

My story: I am a 24 year old women and back in 2012/2013 I was diagnosed with 2 slipped disks, one that was pushing against my sciatica nerve and the other well... Even too this day it barely gets mentioned. I ended up having surgery to remove some of the damaged disk in late 2013 and even that was a complete nightmare operation due to the hospital I had it done at (all I know is something happened with my blood pressure and my breathing, no details. I was under for 4.5 hours for a 1.5 hour operation... Anyhow) things ticked by I was still in pain so more doctors appointments, physiotherapy referral in the end. Done a course of physiotherapy, 2016 came and then was checked out for rheumatoid arthritis as I had inflammation in my eye. She ruled that out and sent me for a blood test and I was then referred to MSK with the talk of fibromylalgia. After an appointment there I was boarder line for it on the touch test but never was the mental side of things mentioned really. The depression, anxiety, trouble with sleep, panic attacks, ibs etc I've suffered with since 2006. He did however diagnose me with hypermobility in my knees, wrists and fingers I got kicked back to physiotherapy and then referred to hydrotherapy which hurts like hell afterwards and waiting on the list for acupuncture.

I have no idea what to do as no one seems to have any clue what is actually wrong with me, is it worth harassing my doctors? I'm in too much pain to work, I have pain in my elbows, my back, my knees, my wrists, my fingers ache all the time, I drop things constantly.. And then trying to deal with the sleep... I can't remember the last time I fully slept without waking up every hour or so because of pain since this nightmare began, this is unfortunately just a short list of what's going on without getting into the more personal symptoms

Thank you for taking the time to read if you did, I can't sleep currently and after a few years of dealing with whatever is going on I needed to vent with people who might just get it and understand the actual physical pain. I feel like I'm getting no where with doctors, that perhaps they actually have no clue what is going on and just want to hide away from people wanting to prod me.

Hope everyone's having a better night than I

oTixxyo (the new rambler)

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9 Replies

  • Posted

    I know that feeling nobody listening my son of 31yrs got diagnosed before me. It has taken since 2004 for me to be diagnosed I still think some of the docters dont believe it.I suffer depression has welland can't work coz of being in pain. And to top it off went to pick up my medication from chemist they said docters wouldn't repeat it on Friday evening so had to suffer all weekend with no medication till Monday 10am only to be told by nurse the chemist did not pick it up. You just got to keep going back and forth to docters that is how I did it so someone would listen good luck

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    • Posted

      Thank you, I'll keep trying I guess, my partner is looking into private health care for me as I'm on NHS, they seem to take it a little more seriously I guess. I hope that you get your pain medication sorted out between your pharmacy and doctors.

      oTixxyo

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  • Posted

    You are not alone. I had been put through the ringer before getting diagnosed. They would diagnose a symptom and then run more tests. I would come home crying from doctor visits cause I wasn't getting answers.

    You need to be your own advocate and keep pushing forward. My first doctor told me i was just being depressed for not working and needed to get back out there. I called my insurance and got a new doctor who put me through the ringer but said we will get to the bottom of this together.it was tough but got answers and help. You can do it and if you need to rant, scream yell or cry we are here. We know what it's like.

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    • Posted

      As many others it's a long hard fight to get diagnosed after trying many medications I finally got referred to my local pain clinic and attended seminars all about pain two lady's also attending had fibro and they started telling us about their symptoms and the effects fibro had on their lives , I sat thinking I've got all the symptoms they are explaining , I was at that point being treated for osteoarthritis if my facet joints and many other joints when I spoke to my GP about fibro and could I also have it she just said its just another label it won't make any difference knowing you have it or not I disagreed with this I wanted an explanation for how I was feeling daily why I was constantly off work etc I as seen by a rheumatologist (nhs) who just said u had wear and tear try Pilates and take a drug which I had already tried I felt so disappointed if waited 6 months to see her and this was all she had to say . Earlier this year I had both my big toe joints replaced recovery was slow and painful and still is I decided to get checked out privately the cost £150 but well worth the money my rheumatologist examined me looked at all m medical records and X-rays and diagnosed me with fibro his knowledge of fibro was excellent he was honest and also prescribe medication that helped with my feet . I have seen him several time since he has helped me fight for early retirement written reports £50 and I've just heard this week that I've been given early retirement in 52 . It angers me that I was not examined or taken seriously when seen at my local hospital it's such a straight forward examination there are no excuses . Depending on how knowledgable your GP is on Fibro will determine how keen they are to diagnose you . Another Interesting fact from my rheumatologist is new research shows use of hypnotherapy and other relaxation therapies are the way forward in pain control most pain meds don't actually work but using other therapies to control pain is the way forward obviously it's not a cure but I'm a great believer in trying new things if they work for you then great another useful tool to keep sane while living with this awful condition

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    • Posted

      Thank you, as said to mandy, I'll just keep trying. It can't be "normal" for a 24 year old to be like this, there has to be something going on. It all makes me feel so helpless and like doctors just aren't listening.

      Ah well.. I'll keep plodding along

      oTixxyo

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    • Posted

      Thank you Tina, my other half started looking into private health are for me this morning, NHS just don't either seem trained enough or care enough. I know having a diagnosis won't change anything, the pain etc will all be the same but to know it's not in my head and be able to give my health condition a name I think will help instead of the "no one knows what's wrong maybe I'm going mad and it's just in my head" mentality I have going on.

      I'll keep trying and researching, it's just so damn frustrating lol.

      Best of luck to you

      oTixxyo

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    • Posted

      Hi, it might be worth getting your bit D levels checked too. Low levels seem to be more common in people with fibromyalgia. Mine was very, very low. Meds can help with this over a matter of months.

      I was lucky as my Dr thought I might have fibromyalgia and consultant said I definitely had it. He was so nice ,understanding. Going for first physiotherapy appointment on Friday but don't think it will help.

      Good luck xx

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    • Posted

      Thanks Denise, I'll try to remember to mention that to a Dr, my favourite role left last year so struggling to find another that I like.

      Hope physio helps you even if just a little

      oTixxyo

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