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The UKFibromyalgia Forums • View topic - Diagnosed today



Diagnosed today

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Diagnosed today

Postby Charlie73 » Wed Jul 20, 2016 5:55 pm

Hi all, I've just had a diagnosis of fibromyalgia and chronic fatigue today, the consultant I saw told me a few things that I'm not entirely happy about, and I'd like to ask for some advice about where to go next please.

1. I'll feel better if I lose weight.
2. Paracetamol and CBT will be sufficient (despite the fact my GP prescribed me tramadol, and it doesn't really help that much, just spaces me out)
3. "Rheumatology doesn't really treat fibromyalgia, we only deal with things like lupus and arthritis'"
4. I'll get better


:shock:
Any advice most gratefully received :oops: I'm a newbie at all of this, I want it to stop, I want my body and sharp thinking back :(
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Re: Diagnosed today

Postby LindyM66 » Thu Jul 21, 2016 6:32 am

Hi Charlie,

I was diagnosed in April of this year, by a rheumatologist. I found that my GP was rather flippant, regarding my symptoms. He told me " it's purely lower back spasms", despite the fact I was telling him of the pain and stiffness I had in my shoulders, neck, arms, hips etc. He flipped me a business card, and said " self refer" - to physio. A 12 week waiting list.
Anyhoo, long story short - after 2 visit to A & E, where the consultant on duty called my GP and said this lady needs further investigation, I was referred to rheumatology.
I find, through reading other posts, that many people don't have a positive experience on their journey before diagnosis.
Fibromyalgia, is a life-long, chronic condition. It doesn't go away, but symptoms can have peaks and troughs. I take gabapentin 300mgs x 3 daily, along with 100 tramadol. I find this does make a difference, although it has taken a good couple of months to kick in - which is normal I believe. It has to build up to a therapautic dose. I'm not completely pain free, but manageable, mostly.I also attend physio once a month at the moment. I do small stretching exercises-nothing fierce. I find fierce exercise just makes me worse and I end up done in for days. You will learn what you can do, what you can't do, and what you have to do differently, in order to cope with your symptoms.
Fibromyalgia affects each person in different ways. I thought I was kicking the bucket to be honest. My whole body seized up and the pain was horrific - and my GP flips me a physio card!!! Helpful NOT!

Much Love
Lindy x
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Re: Diagnosed today

Postby *Lisa* » Thu Jul 21, 2016 11:11 am

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: Diagnosed today

Postby Charlie73 » Thu Jul 21, 2016 7:34 pm

Thank you ladies.

I guess I'm feeling a bit disappointed, I was just expecting a little more than I got at my appointment, he seemed more interested in my coeliac disease than anything else. I have pain everyday, paracetamol doesn't touch it. And the tiredness is just never ending :sleep: now I know what's wrong I want to move forwards to try to make things better.

There needs to be lots of changes, I work full time, just reduced my hours to 30, but I think I need to reduce more. I'm a single parent to 3 boys, my life is pretty much non stop. I've made an appointment with my GP to see if they can suggest anything new after my diagnosis. A friend recently suggested hydrotherapy, so I'll give that a try.

I'm a district nurse, I have endless patience with my patients, but none for myself, maybe I need to look at that too.
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Re: Diagnosed today

Postby Jeyo » Sat Jul 23, 2016 1:16 am

Hi Charlie. I was diagnosed with Fibromyalgia recently and am still trying to understand the condition. I'm a Senior Nurse/Team Lead and I will probably be handing in my notice next week. This condition has turned my life upside down. Try to get your analgesia sorted. If you need to reduce your hours you can maybe do so for a certain length of time to see how you go. I've seen the Occ Health Nurse and have been referred to Occ Health Dr next week. I don't think he'll be able to offer anything that will enable me to go back to work. Take care of yourself as overdoing things will do you no favours x

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Re: Diagnosed today

Postby Charlie73 » Sat Jul 23, 2016 11:06 am

Hi Jeyo,
I saw occ health prof about a month ago, he was very understanding and supportive, I was in tears worrying that this could mean the end of my nursing career. He told me there are other people in our Trust who have gone down to minimum hours and slowly increased their hours over a period of time until they reached their own limit. It's sounds like a long process.
I've just taken over a team of 5 that hasn't had a band 6 for a while and needs strong leadership, and a caseload of 120. 30 hours is really the minimum this team can manage, if I need to reduce further I won't be able to stay in this post. Redeployment might be my only option. I had a sickness review meeting and had my RCN rep with me, was well worth involving her. I am still worried about what the future will hold.
My GP doesn't seem to get offended when I suggest things, I need to do some more research and reading, along with non refreshing sleep, pain and stiffness, I've now got random muscles twitching!

I hope you don't have to leave your job, I don't know what I'd do if I couldn't carry on nursing in some capacity.
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Re: Diagnosed today

Postby Jeyo » Sat Jul 23, 2016 5:48 pm

Hi Charlie, I'll know more next week. I'm band 7 non clinical. I find it difficult to sit/stand for long periods therefore chairing panels and presenting cases to NHS England would be impossible. I'm unable to do clinical work due to a heart condition. So I feel I'm between a rock and a hard place. Keep me posted on how you get on. I hope all works out well for you x
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Re: Diagnosed today

Postby Charlie73 » Sat Jul 23, 2016 6:27 pm

Oh gosh :( I'm currently splitting my days between clinical, admin and triaging incoming calls for the teams, I find when I'm in the office I'm not very good at remembering to get up from my chair, and then wonder why I can't move! I need to move every 5 minutes or so but It's hard because I get totally engrossed in what I'm doing, when my brain is playing ball I try to get as much done as I can.
Are you able to work less hours in your role? I hope your occ health team can offer you support to help you stay in work, I'll keep my fingers crossed for you x
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Re: Diagnosed today

Postby Jeyo » Sun Jul 24, 2016 12:53 am

Hi Charlie,that's exactly how I was and it got worse over time. When chairing panel I'm sitting for the whole 8 hr shift (apart from normal breaks). In the end the pain was excruciating and I wasn't focused or able to concentrate on the case. It sounds like you're really busy and your role is a mix of different things. I'll keep you posted on how it goes Monday.
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Re: Diagnosed today

Postby Jeyo » Thu Jul 28, 2016 5:19 pm

Hi Charlie, seen Occ Health Dr who was lovely. Put my notice in then received a call from my boss who is going to look into medical retirement. If it's going to be jumping through a million hoops and really stressful then I'll not bother. So I'll wait and see the outcome of my bosses discussion with HR. Apparently it makes a difference if your manager puts you forward for medical retirement. I'll keep you posted x
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Re: Diagnosed today

Postby Charlie73 » Sun Jul 31, 2016 11:56 pm

Hi Jeyo, I'm sorry to hear this :( I think our policy is either occ health or line manager to agree medical retirement. I hope hr can clarify for you, will you be better off financially?
I've been thinking about resigning, just worked the weekend, 9 hours both days, flat out without stopping even for a wee on both days. It's insane. Short staffed and too many poorly complex patients. And now I just feel horrible. 100mgs tramadol, I'm off my face but still in pain! I've been scouring nhs jobs pages but there just isn't anything coming up that might suit me better. I think I need to push harder for better support or just resign :(
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Re: Diagnosed today

Postby Jeyo » Thu Aug 04, 2016 4:48 pm

Hi Charlie. No medical retirement due to no financial gain as I came out of the pension scheme in England. But I've had to bite the bullet and I've now resigned. I've moved halfway up the country to be near my daughter as I need the support. I'm off sick until my notice is up in September (2 months). Not sure about after that. Probably benefits. Like you I've looked on NHS Jobs as going from £35000 pa to benefits is going to be very difficult but there is nothing I can find that I could consistently do.
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Re: Diagnosed today

Postby Charlie73 » Wed Aug 10, 2016 10:17 pm

Hi Jeyo, I've seen a few local nhs jobs recently I think I'm going to apply for. 20 hours, 16 hours, not as much money but at least something. I can't survive on benefits, I don't know how people do it!
I emailed my union rep today, I have to go, it's crazy at work, and I can't keep up, calling in sick tomorrow and Friday as I'm in agony again. I've left 4 messages for occ health, told them I've had my diagnosis confirmed and I've heard nothing. No support whatsoever. I'm bitterly disappointed.
It hasn't been a good week, someone has had car trouble so they've been triaging calls, so I've been out on visits so all shift, continuing without breaks, 1-2 hours overtime every shift, I can't carry on. It seems I'm having adverse reactions to tramadol, saw my GP today who said the only thing she can offer me is 10mg amitriptyline, pain management team here has a four month wait.

I'm starting to feel desperate.
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Re: Diagnosed today

Postby Jeyo » Wed Aug 10, 2016 10:36 pm

Hi Charlie, I'm not surprised you're finding it impossible at work tbh. The way the NHS is at present is horrendous. I couldn't be doing with calling in sick all the time and I was finding it increasingly difficult while I was there. I felt I had no option but to leave. I'm still in pain but the relief of me not having to stress about work is so helpful to my general feeling of wellness. I take tramadol x 2 qds with paracetamol for breakthrough pain. Along with the tramadol I take naproxen bd. I take 2 - 3 amitriptyline at night along with mitazapine to aid sleep. It may take a while to get your med regime right for you. Don't give up. Just tweak it until you find the best dosage. I know, this condition does try your patience! As for Occ Health, I found they couldn't really do a lot for me as I can't sit/stand or mobilise for long periods. My focus and short term memory is awful. I find it difficult to retain new information. I really would have been a liability at work. I hope you find a way to stay at work if that's what you want to do. Just remember, your health comes first. I'm trying not to think about benefits yet. I'm on full pay till my notice ends in September. I'll start worrying about benefits later when it's coning closer. I don't feel I have a choice as the way I feel at present I couldn't work whether I wanted to or not. Keep me posted on how you're doing. Try and get your meds sorted x
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Re: Diagnosed today

Postby Jeyo » Thu Aug 11, 2016 11:09 am

Hi Charlie, was just thinking about you this morning. Something else you could try (which I found helpful) is self refer to ITalk. They will give you a 9 week course of CBT (all over the phone if you prefer). The pack is helpful and easy to follow. Also you can self refer to your local Adult Services Department who will put you in touch with your local OT . The OT can provide you with aids which can help around the home raised toilet seat, perching stool for the kitchen, bath/shower seat if needed. I found that self referral is quick and easy. Hope this helps x
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