A letter to my consultant

22 Mar

Current medications:
Propranalol Hydrochloride (80mg daily) – for anxiety and panic attacks
Lansoprazole (30mg daily)
Etoricoxib (60mg daily) – for inflammation
Pregabalin (300mg daily) – for fibromyalgia
Duloxetine (90mg daily) for pain, depression and anxiety.
Dianette – contraception and treating polycystic ovary syndrome

Recent medications:
Cipralex – for depression and anxiety
Celebrex – for pain
Prednisone (12 week course to treat chronic eczema)

Past surgeries:
Four wisdom teeth removed
Laparoscopy (to investigate painful periods and bleeding) (2007). Laser ablation done at the same time to treat inflammation in cervix.
Cholecystectomy (2008)

Current diagnoses:
Synovitis in left ankle and inflammation of tendon at side of foot (originally misdiagnosed as achilles tendonitis 18 months ago), diagnosed approx. 6 months ago.
Pompholyx eczema/dyshidrotic dermatitis (diagnosed in 2012)
Polycystic ovary syndrome (diagnosed in 2001)
Fibromyalgia (diagnosed in 2006)
Irritable bowel syndrome (diagnosed in 2002-ish, originally treated with Mebeverine but currently under no treatment due to side-effects)
Depression and anxiety (first diagnosed at the age of thirteen) and Borderline Personality Disorder.

Current symptoms:
Pain and stiffness in fingers, knees, upper neck/base of skull, hips, feet/toes, lower back and wrists. Fingers, knees and toes most affected, although neck is becoming much worse. Pain and stiffness much worse in morning/after sitting still, and takes at least 2-3 hours after waking to begin loosening. Gentle movements seem to help the pain in most joints.
Unable to bear weight on heels for 2-3 hours after inactivity.
Swelling in fingers, toes, ankles and knees after waking/inactivity, especially in joints closest to nails in fingers and toes.
Clumsiness, especially in morning. Unable to grip items with confidence, especially pens and cups.
Fingers and toes have become misshapen over the past 18 months.
Weight loss. This is a particular concern for me as I haven’t dieted, although my appetite has decreased dramatically, again over the past 18 months. Since September 2012 I have lost almost three stones in weight, which is very unlike me as I have always struggled with keeping my weight down and I love food.
Recurring cold sores.
Itchy eyes and very dry mouth, which seems unconnected to medications.
Lack of temperature control. I have suffered from this for a number of years, but only at night. Recently it has become an issue throughout the day also, leaving me either far too cold, or far too warm. Fingers and toes always feel painfully cold regardless of weather or environment.
IBS has become much worse in the past 18 months, with constant diarrhea, cramps and loss of bowel control.

I have been referred to orthopedics, physiotherapy, rheumatology at SDGH, and to the local mental health team all regarding my symptoms. Because the pain and swelling in my left ankle was misdiagnosed as achilles tendonitis, they have only concentrated on that area of my body, and not taken the whole range of symptoms into account, which I feel are connected somehow as all my symptoms either appeared or became worse around the same time.
Emotionally, this has had a huge impact on me, and my life. I am no longer able to live independently as I need somebody around to ensure I have help with basic tasks (like cooking, taking a shower, and walking), as co-ordination and balance are something I struggle with a lot now. I am no longer able to go outside on my own in case I fall or am unable to bear weight on my heels. As a result I am now almost entirely housebound and even though I have bought a walking stick (after physiotherapy claimed I didn’t need help with walking), this only causes pain in my hips and neck as I try to balance with it.
I feel that if I could at least have a name for what is happening to me, I would cope a lot better, and possibly find a treatment which may help. Currently, I have lost all hope of ever leading a normal life, of being able to work. My hobbies all involve movement (walking, sewing, knitting, photography) and I am no longer able to do these things, and the rapidly increasing pain in my joints leave me unable to do the most basic tasks such as hold a pencil (I am also a writer) or comfortably type on a keyboard without wrist pain.

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Posted by on March 22, 2013 in Every day life


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16 responses to “A letter to my consultant

  1. bipolarwings

    March 22, 2013 at 1:28 pm

    Surprised you are on Propranalol Hydrochloride for panic attacks and anxiety. My consultant said My anxiety is too severe for it take effect. I might be starting Pregabalin as it helps with anxiety too. :) Anyway just rambling and hope you feel better x

    • halfwaybetweenT

      March 30, 2013 at 11:15 pm

      It wasn’t strong enough at first; it’s only when I started on the slow-release that I noticed a difference. I think it depends what sort of anxiety you have as to whether it works. It calms down the all-day general paranoia, but it doesn’t come close to helping with panic attacks.

      Thank you :)

  2. sasannt

    March 22, 2013 at 5:56 pm

    I don’t mean to be invasive of your life or anything – but have you tried changing your diet? IBS and some of your other problems could well be inflammation in your body, which a good diet could help. If you look up paleo, it might be worth a shot.

    I’m diagnosed with a few mental issues and various physical, but now I’m healing. There is science behind the inflammation theory, I could dig some up for you if you’re interested!

    • halfwaybetweenT

      March 30, 2013 at 11:13 pm

      IBS has been a problem since childhood, and so far no diet changes have made the slightest difference *sigh* And I’ve tried everything.

      I’ve read a lot recently about inflammation, and I certainly agree that it causes huge problems. I have no doubt my body is full of it; well, I have x-rays to prove a lot of it is! Sadly, I’m yet to find anything which helps in the slightest.

      • halfwaybetweenT

        March 31, 2013 at 2:33 am

        Plus, almost every condition I have has IBS as an unfortunate side-effect.

        • Aslaug

          April 2, 2013 at 7:01 am

          I’m in the group that believes IBS is not a sideeffect, more a symptom of a cause. IBS is the digestive system reacting to something in our food, which then starts a whole bunch of reactions to our system.

          When we don’t digest food properly, a immune response i started, and this ultimately leads to the body attacking itself (because a lot of the food we react to, are very much alike our own cells), and this causes autoimmune disease in some people.

          She explains it better than I feel I can in a comment. I do hope you’ll find a way to feel better, no matter what.

  3. AlwaysARedhead

    March 22, 2013 at 6:18 pm

    Gosh, I hope you have better days soon.

  4. Natalya

    March 22, 2013 at 7:48 pm

    Do you have RA? Rheumatoid arthritis can cause some of the things you mentioned.

  5. K Cutler

    March 22, 2013 at 10:01 pm

    I am so sorry that you’ve been living with all of this.

  6. booguloo

    March 23, 2013 at 6:49 am This was a God for my shoulder and knees. It will work on all musculature and bone pain relief. It is a patch and it’s inexpensive. I encourage you to check this out.

  7. faithhopechocolate

    March 23, 2013 at 5:49 pm

    I really, really hope that this letter helps get you the help you need. Applying much prayer. Xxxx

  8. The Quiet Borderline (back in hospital)

    March 26, 2013 at 7:26 am

    Good letter. I think you are totally right.

    That mix of physical and mental issues makes everything even more difficult to deal with. I so hope that you can begin to receive answers from the professionals so that you can get back to leading a more normal life.


  9. anicelia

    March 29, 2013 at 7:13 am

    Hi, I would also like to know, how is your diet? Is it very acidic? Do you get exercise, even very gentle exercise, any non-weight bearing movement?. What is the diagnosis that led to all these meds for the physical side of things? Do you get out of your home? This is too much medication …..

  10. anicelia

    March 29, 2013 at 7:18 am

    Sorry I have re-read your blog, I see the diagnoses; but again, have you seen a dietician? Is there not too much acid in your diet? I’m not one to talk, I am so overweight and unhealthy, but I know what makes me feel healthier, and it has a lot to do with diet and fresh air and exercise ?

    • halfwaybetweenT

      March 30, 2013 at 11:11 pm

      Hi. I have a low-acid diet, due to complications after gallbladder removal. Trust me, I’ve seen dieticians galore; none of them seem able to give me any real advice which I don’t already know. I’ve changed my diet hundreds of times and I can honestly say nothing makes any real difference, apart from the things I’ve already cut out.

      I get very little real exercise, due to being stuck in the house 90% of the time, and only being able to walk/move my joints for very short periods. I do try to move around as much as possible, but it’s far from easy. Fresh air certainly helps, but it’s hard to get out in it.


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