A multitude of issues, but nothing is getting resolved.

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A multitude of issues, but nothing is getting resolved.

Postby Gunner Al » Tue Jul 03, 2018 12:14 pm

Hi all, I'm Alan and I wonder if any of the longer term sufferers if FM could offer any suggestions to my quandry, as my doctors seem to be doing nothing at all.

I had a motorcycle in March 86, resulting in a below knee amputation of the right leg, that in a way, caused me very little issue compared to more recent events, I've worn a prosthetic since and apart from a few skin problems, I've been fairly medically OK. I did and still do suffer from phantom pain, but it's manageable. Roll forward to 29th February 2008, (tes, Leap Year Day), I had an accident at work, which really ruined my back, since that day, I've had constant back pain, stiffness and mild depression, I tried many forms of pain killer from Dihydrocodeine, Pregabalin, Gabapentin, Tramadol and Fentanyl patches. The latter, turned me into an agry short tempered guy, which is a complete opposite of what I am, I reverted back to Tramadol and have stuck with them ever since. The depression hit me as a result of going from working 11 hours a day in a job I really enjoyed, to a complete standstill in one day, this weighed very heavy on me, as I had to simply, just stop my life, it almost drove me mad. I worked as a transport manager for a road haulage company, I had 58 artics and 300 trailers to control, I loved it, I thrived on the pressure, but it never caused me any stress or distress, odd I know, but, that's the way I was, the stress started when I couldn't go to work, I felt useless, a waste of space and not worthy of being alive. I was always in control, and this was taken away from me, so, I was given anti-depressants. I was also, prescribed, Naproxen for osteo-arthritis, Losartan and Indapamide for blood pressure and some other meds that I can't remember.

As time went on, I accepted my fate, my doctors told me, that I would never be allowed to work again, no matter what. To occupy my mind, I did crosswords, word searches and things to keep my mind sharp. After a while, I went on a course of A level maths and English, this took up two days of the week and I passed with flying colours. I was at a loose end again and I'd always had an interest in computers, so I signed up to a course on System Support, this took 9 months for 1 day and week and passed this with the second highest marks out of 24 in my class. I immediately signed up for Level 2 and passed that too. The college offered no higher qualifications than this, so that was the end of that, so using my skills, I was building, repairing and generally messing around with computers for friends, I loved it, never did it for money, just to keep me sharp.

I'll keep the next bit short, but from 2010, to January 2017, my partner and I were just not getting on, (she was behaving oddly, getting us both into a huge amount of debt and she blew through £45,000 that my mother had left me in her will. I knew nothing about this, until my bank called, I confronted her, she refused to talk, because of this, on October 21st and 22nd of 2016, I suffered two seizures on consecutive days and I was in hospital for several days, she never visited me or called the hospital to ask how I was. After several consultations with my solicitor, I acted upon his advice and left her, I now live alone, am getting back to being financially safe, have a new girlfriend and I'm very happy).

In March 2017, I was summoned by the DWP, to attend a medical at a local office, the first time I attended, I was refused entry to the building, as I was using crutches to get around, so did not satisfy health and safety rules in case there was a fire and I wouldn't be able to leave the building safely and without putting others at risk. Based on this, I was given an appointment at another building in 6 weeks time. Two day following the first and cancelled meeting, I recieved a letter from the DWP, informing me, that because I'd not attended the meeting, my benefits would be stopped until I'd had the next meeting and satisfied the conditions. I was devastated and complained, the ruling was upheld and I had £17.39 a week to live on. :evil:

After several more medical examinations and with the help of the Citizens Advice, I was given back my benefits, back dated to the first day after it was stopped. During the last medical in October 2017, the intervierwer asked me all sorts of questions about my health conditions and promptly announced to me, that the report they'd requested from my doctors, stated that I had FM and it had been on my records since the early 90's, I knew nothing of this and was very taken aback. On my return home, I went my doctor and asked why I'd been diagnosed with FM as no-one had the decency to tell me. It had indeed, been on my records since 1992 (at this time, my doctors had thought I had ME). I again asked, why I'd not been informed of this, my doctor had no answer, I was both fuming and dejected, I'd been trying to get to the bottom of the constant pain and tiredness for years, I felt very let down.

In early 2011, my doctor prescribed me a statin, I didn't question this and didn't realise the damage these could do to me, I became sluggish, had more pain and thought my condition was behind it, after a chance encounter with a retired doctor, he informed me of the side effects of these and how bad they were, he told me that no doctor in the world would take them, he never prescribed any to his patients and that I should do some research and make up my own mind. I did and was mortified by the findings of the majority of the medical professionals arounf the globe, after two days, I felt a great deal better and have kept off them since,

Since the seizures, I've noticed that my condition has become worse, I get no respite at all from the pain. Several months ago, my doctor changed my AD medication from Citalopram to Duloxetine, this was useless, it wiped me out for days at a time, I asked the doctor to take me off them and I was given Sertraline, of dear, this was horrendous, the symptoms were a great deal worse, the nightmares were so vivid, I fell out of bed several times, trying to escape the bulldozer that was trying to kill me. Another visit to the doctor was arranged and I was prescribed Mirtazapine, I took one and this caused me a severe reaction, I was told to take is at 10pm, I did and woke up a day later at 8.45pm. I was like a zombie for the next two days, I stopped them immediatelly. This current hot and sunny spell is kicking the crap out of me too, I can't sleep, my appetite is very poor and I'm restless and agitated, when I do eat, I'm very sensible, plenty of veg and fruit, plus lots of water, my diet is good, but I cannot exercise and I'm putting on weight, it's a no win sitution for me and it's really getting me down. I've spent hours researching the condition, but I cannot seem to get to grips with the condition, can anyone out there please help me?

I'm very sorry for the rather long post, but I thought the more I gave you, the better it would be to understand my issues.

Thank you.

Alan.
Gunner Al
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Re: A multitude of issues, but nothing is getting resolved.

Postby *Lisa* » Wed Jul 04, 2018 9:44 am

Hi Alan,

I think they let you down by not saying to you in the first place of fibromyalgia. You could have been given help so long ago but here we are....

I find a combination of medications, treatments and light exercise a benefit although everyone seems to differ. It’s not an illness that one glove fits all. You have to find your own way to help the pain. A lot of it is trial and error as you seem to have been through some of it with the meds! Iv been there also.

Have you ever been referred to a consultant rheumatologist? Or to a pain clinic? They can help with pain management with all types of help from medications, pain injections to treatments and therapies. Have you ever looked into CBT? Had any hands on treatments? Are you under a neurologist for the seizures? A neurologist can also be involved with fibromyalgia pain management.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: A multitude of issues, but nothing is getting resolved.

Postby Gunner Al » Wed Jul 04, 2018 10:25 am

Hi Lisa, many thanks for the replies, following the seizure, I was seing a neurologist, but he decided that the seizures were caused by the amount of pressure I was under and not an epileptic episode, there fore, it is classed as "dissassociative" and very very unlikely to happen again, as I've removed all the negatives from my life. Luckily, the doctor I'm currently seeing is a locum and based at the RVI-Newcastle, where the neurologist is, so I will mention this next Tuesday, when I see her. I've had 6 sessions of CBT, but found it offered me nothing, but I'm on the list for another 6. I've had two sessions with the pain clinic, they were the ones who suggested the Tramadol and gave me a TENS machine, which I find a bit hit and miss. I've had two sessions at the back clinic and I'm awaiting another appointment.
I do exercise when I can, I walk my little dog 3 times a day, some walks are longer than others, depending on how I'm feeling. I also cycle when I can, my bikes have lower gearing, so the effort I have to put in is lessened. I'm also undergoing a ten session physiotherapy session, I've had 2 so far and it's 2 weeks between each one, I'm having accupuncture as part of this and it does seem to have some effect.
Most of the injuries from the accidents I've had are affecting my right side, apart from the leg, the arthritis in causing th most grief in my right hip, shoulder, elbow and wrist, so I do favour my left haand side. I was prescribed 2 gym sessions a week by my doctor, which only cost me £2 per session, but as with everything else now, costs are being cut in the NHS, so, that has stopped. The only gym near me, is £34 per month and I can't afford that and they don't do concession rates or pay per session.
I had a years driving ban following the seizures, this left me totally lost and helpless, the bus pass was handy, but the simplest of things I could do in the car, was taking all day, I have my license back now and life is a lot easier.

Thank you.

Alan.
Gunner Al
UKFM Newbie
 
Posts: 3
Joined: Sat Jun 30, 2018 1:19 pm

Re: A multitude of issues, but nothing is getting resolved.

Postby *Lisa* » Wed Jul 04, 2018 10:12 pm

Like many of us you seem to have tried or trying everything you can with not much effect. CBT should be longer then 6 sessions, I know the NHS have lessoned the amount due to cuts. Double the sessions are really needed at around 12. I found it can be the therapist that makes it work for you also. Trouble is I feel their made to do these sessions as one glove fits all. In fact the last time I had CBT on NHS I was told my sessions had been cut from 12 to 8 due to new rules and cut on funding plus I had to fill out a form each time I went and if I wasn’t showing any significant improvement I was many times threatened to be taken off the course as they cannot waste time on people they cannot cure so to speak! So the pressure I felt was on from day one! Yet many take age to get to grips or need extra therapy for whatever reasons.

Same I found with NHS treatments. If your chronically ill they cannot carry on treatments and so your left to work out and fund your own.

Saying that I have tried many many different types of therapy, treatments and meds and still always look for things to help. It’s like a full time job!

Like you I don’t just have fibro I have many other back problems and juggling treatments for different types of pain and problems I find exhausting.

It’s keeping going, keep on trying different things and never giving up until something suits.

On the ukfm website itself they have a list of treatments and therapies and different meds, you may find something there.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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