Chronic Pain Syndrome & Mental Health - Getting the NHS to look at You rather than Your 'Label'

[27pebbs]

I was diagnosed with CPS in late summer of this year after repeated visits to my GP for over the past 12 months. Unfortunately I have a long physical & mental health history having been asthmatic since a toddler with many life threatening episodes. I am also a survivor of childhood-adulthood sexual & emotional abuse. I would challenge anyone to not have mental health problems had they also lived through similar circumstances. I have had several abdominal surgeries from the age of 10 culminating in a radical hysterectomy at the age of 30 after numerous miscarriages & eptopic pregnancies. During the past 17 months I have undergone numerous tests & visited 5 separate NHS Specialists with almost weekly visits to my GP, this is extremely rare for me, all my regular meds are on repeat prescription & it's more normal for my GP to ring me & ask me to visit. I am now on 8 separate medications, most of which I resent taking & the impact they, along with the constant abdominal pain I have, have/are making to my life & that of those I Love. None of the pain medication including morphine & other opiates, I have been prescribed have had any real effect on the pain, apart of course from the fact I was 'up there with Lucy' in the sky of diamonds & didn't really give 2 monkeys! For the best part of 17 months now I have been in-bed more than out of it. After having to pay to see one of the Specialists (the 'urgent' NHS appointment was for January 2013) he has agreed to perform surgery & told us that it would be treated as urgent regarding the wait. It's complicated because more than one specialist surgeon has to be involved because my case is complex & very high risk with no promise of a demise in my pain. It's a chance I am willing to take because my life seems of little or no value as I am now. I am not able to eat because it is followed by agonizing & crippling pain. The doctors all know this but are extremely reluctant to prescribe me energy shakes such as Fresiben or Ensure because I have a 'history' (which as far as I am aware means 'past' not current or future) of eating disorders. Despite my constant reassurance that I am not trying to starve myself or loose weight. As a Spiritual Pagan I believe & have such strong Faith. It is that alone that keeps me here. I just find all of it so hypercritical. I feel strongly the delay in my treatment & often the way in which I have been treated is due to the one note/word or whatever on my medical notes that states 'mental health'.

[missrat]

If the doctor will not prescribe energy shakes, it might be worth trying Complan, Build Up or similar from the chemist. They can the see that you are taking steps yourself to try to gain weight.

[27pebbs]

Hi missrat, thank you for your comment. I do have complan drinks which are so helpful, the availability & cost of these supplements do have an impact on how often I can purchase. I do not have my own place (am completely reliant on the generosity of family & my boyfriend) after a 'close friend' completely abused my vulnerability after persuading me to give up my long term secure tenancy to 'share' a tenancy with her. Within a few short days I was emotionally & verbally abused leaving me in fear of my safety, locked out of our new home by this person, all my goods withheld (including vital medication) followed by over a year of harassment. The result of this, after 17 months of this person living in 'our' home with all my stuff, paying NO rent she was eventually evicted & despite me explaining to both the letting agents & the landlord what had happened on numerous occasions, both in person & in writing by myself & a solicitor, numerous police incident reports of the harassment; the landlord & letting agency refused to return my £800.00 deposit. Even though my share of rent was paid in full & I had no access to the home or my property through the term of the tenancy & beyond. Due to my health I have no way of earning to save to secure a tenancy, the council really don't care & have been very unhelpful, at times verbally abusive along with plain outright lies. So there are things I feel it is only right I have to contribute to, to the 2 people who help me with somewhere to stay. I am no longer able to drive because all the medication & lack of substance make my head too dizzy. I am not able to use public transport for the same reasons, so am reliant in too many ways to mention to these 2 special people. For me to afford the amount of complan I would healthily need, let alone have the energy to make up, does not seem to be possible for me at this time.

[teadrinker]

Sometimes just eating high calorie snacks little & often can help to boost your calorie intake, or using full-cream milk if you can stomach it. Fresubin & Ensure are full of calories, so hardly something you'd drink willingly if you were losing weight!

I understand where you are coming from with the mental health label, having a history of postnatal depression myself, and having to subsequently struggle to get a particular doctor to take my pain seriously. Before I had a diagnosis for the pain I went through some very difficult & stressful personal problems but didn't dare mention it to anyone other than my GP who I trusted (& who was brilliant) because I believed I would be labelled. At one point it was implied that I was making it all up. Even good friends were surprised that I was "still in pain" when I'd come through the stressful events, which was perhaps even more insulting.

Chronic pain is poorly understood by the majority and therefore people jump to conclusions.

The relief when you are taken seriously is huge. Keep holding on to the hope from the surgery and your faith.

[27pebbs in reply to teadrinker]

Bless You & Thank You.

[missrat]

You might find the website chronicpainsite.com helpful.

Ann

[27pebbs in reply to missrat]

Thank you Ann, I will check it out & post here.

[Jane-Martin]

Just to say I am sending you love and good thoughts. It is too late to write anything sensible! but your posts made me want to reach out and say hi.

[27pebbs]

Bless you Jane & thank you so much for your love & thoughts xx most unusual for me to be awake at this hour, pain was so bad this morning I couldn't get up, eyelids so heavy when pain at its worse, so hard for me to keep them open today. Eventually managed to wash & dress this afternoon but not too much later was back on the bed as too dizzy to stand...lol if I

[27pebbs in reply to 27pebbs]

sorry hit return by mistake. I was attempting to say that if I don't try & laugh at myself, think I will start crying & not be able to stop.

[LEWIT]

Hi 27pebbs,

I am sorry to hear that your having such a rough time xxx

I have chronic pain syndrome also. I was diagnosed almost 3 years ago now.

Please don't give up and please don't let other people drag you down. Stay strong and you will get through this and live your life the way you want to.

CPS is not taken seriously in the NHS. People don't understand it. CBT or talking therapies alone will not help. Please carefully consider the surgery.

I am not sure, have you seen a consultant that specialises in CPS? Did your GP alone diagnose you? I am not a doctor but I really believe that you need to see a consultant that specialises in this area before you even think about surgery.

My rehabilitation takes a multidisciplinary approach. I have physiotherapy, hydrotherapy, counselling and take Nortriptyline and Fentanyl. I use my disability benefits to pay for my treatments. It is worth every penny. Your entitled to disability benefits like disability living allowance.

Please, please find a good consultant that you will put you on the right path. It really is the key, I get the impression that you think that surgery is the answer. I am not medical and in a way I have no authority to say this but my consultant and other professionals that treat me, tell me that my central nervous system is over sensitive which is why CPS sufferers experience so much pain. If you have a over sensitive central nervous system, surgery may not be the answer, you need to get the opinion of a specialist.

Through my experiences, the goal of recovery of CPS is to train the brain to undo the learning of pain, the brain is plastic so it can learn anything! Recovery is very possible.

Research a specialist in your area that treat CPS, mine is a Rheumatologist, I believe pain consultants are also very good. When choosing a specialist, follow your gut because it is very important to your recovery.

Good luck, I really hope this helps and if you need to ask me anything, let me know.