opinions please on my rhuematologist diagnosis

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opinions please on my rhuematologist diagnosis

Postby kele12 » Fri Mar 07, 2014 11:44 am

Hi everyone,
I ve recently been diagnosed with FM, 4 months ago. I saw my rheumatologist yesterday a quick 10 min visit!!!. He basiclly told my that I needed to up my Amatriptyline from 10mg to 20mg & get more exercise, and that if I did I would be painfree in 6 to 12 months. He also said that if I didn't I wouldn't get better. I try to do more but feel exhausted & in more pain. Iam tired all the time and in constant pain everyday. So I dont understand how I can ever be totally pain free.
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Re: opinions please on my rhuematologist diagnosis

Postby SchroedingersCat » Fri Mar 07, 2014 11:56 am

I'm surprised at him giving you a timeframe of 6-12 months. My rheumatologist suggested recovery from symptoms was a possibility if I continued to manage my condition as I was doing at the time I saw her (vitamins, exercise, mindfulness, etc) but her timeframe was more in the range of 2-3 years. And she did say that only roughly 30% of her patients recover from FM, but she was confident I had the right mindset to be in that 30%.
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Re: opinions please on my rhuematologist diagnosis

Postby *Lisa* » Fri Mar 07, 2014 3:48 pm

Hmmmm...

Now my personal opinion is that fibro cannot be cured but it can be managed by exercise/healthy diet/medication and therapies. You need to continue what helps you life long.

For example i have regular trigger point therapy, if i stop this i become severely disabled as the stiffness gels around my joints and im unable to move. So i carry on and on having therapy to maintain some sort of mobility.

I exercise and eat healthy yet pain levels no different although the walking can iron out some stiffness which helps.

We do all differ which is hard to set everyone the same regime but doctors feel nowadays that a little exercise and therapy will cure all :roll: but i believe it only maintains it to a degree.

Theres so much more to consider like pacing/learning your limitations/cutting out stress and pressure (very hard to do) which all contributes to pain levels.

Its a daily up keep so to speak and one that takes all your time up as your always conciously aware not to over do things etc etc...

A postive mental attitude does help :mrgreen:
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: opinions please on my rhuematologist diagnosis

Postby kele12 » Fri Mar 07, 2014 7:08 pm

thanks for both replies, you both have been very helpful. I was doubtful of the 6 - 12 month timescale. walking does help with stiffness but not pain. i do try to pace myself and not overdo things. he just seem not to have time for me, I got the impression he thought FM wasn't a real illness.
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Re: opinions please on my rhuematologist diagnosis

Postby FluppyPuffy » Fri Mar 07, 2014 10:50 pm

Unfortunately a lot of specialists/consultants have that similar air about them and just seem to want to get patients in, rubber stamped, then out as quickly as possible, which is so frustrating when you're wanting to try and find out more about the dx you have been given, as well as trying to find a little reassurance in amongst all the :yikes: :yikes: :yikes: :yikes: :facepalm: :facepalm: :facepalm: :facepalm:

We know FM is real, and we also have a lot of time for each other as well :bear-dancing: :bear-dancing: :bear-dancing: I have to admit, when I read what you had been told about being painfree in 6~12 months, it made me :banghead: :banghead: :banghead: :banghead: Whilst there are some who are able to get their symptoms behaving more suitably, giving someone such a timescale is a big :nono: :nono: :nono: :nono: :nono: It can set someone up to fail when they find that things aren't going along within the timescales they had been told.
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Re: opinions please on my rhuematologist diagnosis

Postby zappa20 » Sat Mar 08, 2014 5:41 am

Sounds like Fibro isn't his interest so to speak, sometimes consultants can be like a lottery as to what sort of attitude and approach you'll get. Some are only interested in unusual difficult cases to work on putting their next annual White paper together , and not too interested in anything else. And 10 minutes for a first appointment is quite short.

Also surprised he said 6 to 12 months as well, albeit I got rid of fibro symptoms within about a year from actual diagnosis. Everyone is different, and the approach they take will be different or take longer. Staying positive as mentioned is very important. He also might have had the manners to explain the theory behind his suggestions , instead of thinking you're a mindreader.

Imagine he suggested upping the Amitryptiline as it can work well in dampening down the sharp electric shock and burning nerve pain signals in many (obvioulsy not all ) people. From a logical point of view if you have less pain, you'll be lessed stressed overall. And as stress aggravates Fibro it should help. Amitryptiline also seems to help people get some decent sleep another important factor in Fibro, so again hopefully if your sleep quality is improved that in turn will reduce fatigue, improve cognitive function and reduce pain levels.

from an exercise point of view, if we don't use it we lose it so to speak. Being tense with pain we subconscioulsy start to favour using one limb or side, which then puts a strain on the other side or limb, resulting in pain on that side or even strain/injury. . We also tend to subconsciously tense our neck / shoulder/ jaws leading to very tight painful muscle points which feel too sore to even be massaged or touched. A daily gentle stretching muscle routine cna help with this.

Again walking less or suing our arms less, eventually over time our mucles start to lsoe elasticity and capability becoming weaker etc. so even some short regular walks and exercise can greatly help to stop this deterioration and preserve muscle strength.

Well that's the theory at least. Albeit to be honest it all worked out for me in time. It's not so easy when you're starting from a point of feeling like a frazzled, exhausted painful wreck. But if you take things slowly and keep at it at your own pace , try different methods of relaxation etc, you'll hopefully find a way which works for you and can regain some parts of your life which you recognise as your former self before fibro. I know it's mmaybe hard to find time to fit all these things in , but with Fibro you have to start to take care of you as a priority instead of putting everyone and everything else before you.

I'd also ask your GP for referral to a Fibro/Physio nurse led hospital run clinic, if there is one in your area, or a Pain Clinic. They can give you the advice and access to to various methods of dealing with Fibro, and explain how pain signals and heightened pain perception works in fibro , which your Rheumatoligsist seems to have totally missed out on.

Best wishes
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Re: opinions please on my rhuematologist diagnosis

Postby debsmith » Sun Mar 09, 2014 5:23 pm

Hia all

Wow! Sounds like a awful appointment 4u not good we wait 4 months to see the doctor,s 4 advise,support etc if it were me I'd go back 2 ur GP and ask him to send u to a differant rhummi u are allowed a 2nd opinion I had 2do same regarding pain clinic as dr I saw was hopeless sat in chair smirking!!! I left upset + very frustrated waited 10mths 4that appt!! My gp was very supportive and helped me + still does have a google on rhummi,s in ur area on NHS and read up on what there interested area,s are hun good luck xxxx
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Re: opinions please on my rhuematologist diagnosis

Postby kele12 » Sun Mar 09, 2014 9:31 pm

thanks everyone,
you all have been great, lots of good advice. Ive been twice to hospital to see rhuematologist, 1st time i saw a young doctor he was very gd, explained what test he wanted to do & examined me he was very respectful as i was v.nervous. But last time was awful, i saw a diffierent doc older guy, i was waiting for him to say it was all in my head!!! i felt like he was talking to a child. he didnt even say when my next appointment would be. But i will take the good advice from everyone on here & fingers crossed i will get through it xx
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Re: opinions please on my rhuematologist diagnosis

Postby lemurin » Tue Apr 22, 2014 8:48 am

I had a similar problem with the consultant I saw. He told me I had reactive arthritis, to take paracetamol, I'll be fine within 6- 12 months and just to get on with things.

Eventually I saw him again (was referred by my GP again) and this was when he diagnosed me with FM and vitamin D deficiency. He had the nerve to say to me that the last time I saw him he suggested it could either be RA or FM. He became very sober and apologetic when I told him what he actually said. He referred me to the physiotherapists for my back and gave me a prescription for amitriptyline.

This was last December. He wanted to see me in 6 months time to see how I was getting on, but I received a letter last week saying my appointment in June has been pushed back to the end of November now...

I just feel like so many doctors don't care. I have had such bad experiences with some and I just don't understand it.
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Re: opinions please on my rhuematologist diagnosis

Postby zappa20 » Tue Apr 22, 2014 1:21 pm

lemurin wrote:This was last December. He wanted to see me in 6 months time to see how I was getting on, but I received a letter last week saying my appointment in June has been pushed back to the end of November now...

I just feel like so many doctors don't care. I have had such bad experiences with some and I just don't understand it.



It's just the way the NHS works to be honest. The Rheumatology dept may have staff shortages or could be a number of cases needing more immediate attention have happened necessitating the need for other patients slots to be moved. Our hospital is always moving appointments .

Many people only see a Rheumatologist once to get a diagnosis then all further assistance is handed back to the GP to manage.
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Re: opinions please on my rhuematologist diagnosis

Postby teddybear7 » Sun Apr 27, 2014 11:10 am

lemurin wrote:I had a similar problem with the consultant I saw. He told me I had reactive arthritis, to take paracetamol, I'll be fine within 6- 12 months and just to get on with things.

Eventually I saw him again (was referred by my GP again) and this was when he diagnosed me with FM and vitamin D deficiency. He had the nerve to say to me that the last time I saw him he suggested it could either be RA or FM. He became very sober and apologetic when I told him what he actually said. He referred me to the physiotherapists for my back and gave me a prescription for amitriptyline.

This was last December. He wanted to see me in 6 months time to see how I was getting on, but I received a letter last week saying my appointment in June has been pushed back to the end of November now...

I just feel like so many doctors don't care. I have had such bad experiences with some and I just don't understand it.



I've seen my rheumatologist twice once for diagnosis. Given a book and amitriptyline & physio waiting list letter. And once to check how I was doing not on amitriptyline any more due to bad reaction. Physio appointment due May ( waited 6 months for appointment). Told your doing as expected you definitely have it bye bye patient dismissed. No need to see you again. Maybe we expect more from our specialists. But it does seem hard being told yes that's it, read the book, do the physio and get on with it. I think that's why we need forums like this. Oh they did indicate that once you have it you don't get rid you just manage it.
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