Additional diagnoses?

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Additional diagnoses?

Postby Asleep » Thu Oct 16, 2014 3:46 pm

Has anyone found that getting additional diagnoses improves the opportunities for treatment or support? I've had a diagnosis of fibro for about 4 years and I'm slowly going through the available drugs. Tramadol faded away, Butrans only worked for a week and my GP openly admits that she doesn't know what to do next. I've been though rheum, psych, physio and the pain team already.

Should I try getting a referral to get an ME or CFS diagnosis? Even if I got a diagnosis would it offer anything new in the way of treatment. Would it increase my chances of getting early retirement and / or benefits? I don't want to waste NHS time if it wouldn't help!
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Re: Additional diagnoses?

Postby keaedmondson » Thu Oct 16, 2014 5:09 pm

I have been wondering similar. I would be interested to hear what people think too.

I really feel, as well as FM, I have CFS. I know this is possible as I've read about it here. All my other symptoms are controllable but the fatigue is just ridiculous! Don't get me wrong, I'm much luckier than other people. So I feel guilty and like I'm complaining.

The only reason I haven't tackled this with my doctor yet is because like the OP, I'm not sure that it would actually make any difference. I can't have any alternative medication or anything better. Of the two diagnoses FM is the best diagnosis because you can be medicated for it, but I've never heard of anybody being medicated for CFS.
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Re: Additional diagnoses?

Postby Gracious » Thu Oct 16, 2014 10:53 pm

My understanding of CFS and FMS are that they are looked at as part of the same family. If you imagine CFS on one side and FMS on the other, like a 1-10 pain scale. The main difference between these two conditions is based on how much pain the individual is in and of course symptoms history too. Now there is associated pain in CFS, but not to the extend you experience or can experience with FMS. So if your not showing all the pain symptoms then your more likely to be labled with CFS and not FMS.

If you were to be diagnosed with CFS and then your symptoms changed to showing more pain assosicated with FMS, then the old 18 point test would be done and if you are hitting the 11 points you would be moved from being diagnosed with CFS to FMS.

It is also in every piece of literature I have read that one of the big symptoms of FMS is chronic fatigue. So when it comes to FMS you have to work on both the pain and the fatigue. So really all you are doing is asking for another label to a symptom already known to be part of FMS(on the plus your making your doctor/specialist aware you have this symptom).

I suffer from severe bouts of fatigue and its Chronic, (technically this just means, consistent for three months or more), does this mean I have CFS?? It means I have Chronic fatigue, and my doctors and specialists treat me for both the pain and the fatigue as part of my FMS as well as other chronic symptoms, like my depression, anxiety, etc, which are also under the FMS umbrella.

I was told three years ago before being diagnosed only last year with FMS, I had Chronic Pain Syndrome (CPS), and if you look under that label you'll find you can fit your FMS into that too.

FMS is just such a horrible condition, and mimics so many symptoms of many serious conditions.....its a constant mind game as your body plays with you creating intermitting symptoms, to stress you out and leaving you constantly wondering is there more to this. Annoyingly sometimes its just a symptom other times it is an actual real condition needing treatment. This makes it really difficult to know when to pursue an issue your experiencing with doctors or to sit back and see if its fibro having fun at your expense. Its the ultimate tormentor that never gets tired of tormenting and torturing you, physically, emotionally and mentally.

If you need the CFS label, pursue and see what your doctors/specialists say and do. I do beleive its important to make your GP aware of any long standing or severe symptom and get it on your medical record history. One thing is for sure you will achieve a new label/symptom to add to the many, like all of us with FMS. You will also get a nice reminder about pacing and its importance not just for pain but for your fatigue too and how pain can induce fatigue and fatigue can induce pain.

Bottom line is, you have FMS and it comes with fatigue flare ups justs as much as pain flare ups.

FMS is just a rotten condition to work with, but all you can do is work with it, till the researchers learn more about what it truly is, how its caused and how to truly treat the condition, instead of just treating the symptoms. Until then unfortunately we're stuck with constant symptom management.

This is just my interpretation based on my own experience and research. Others within the forum may have different ones.

With loving kindness
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Re: Additional diagnoses?

Postby Theresa34 » Fri Oct 17, 2014 11:05 am

I was diagnosed first with arthritis which meant I got to start seeing a rheumy. It was a year later (this year) when the fibro kicked in. My nurse said in a way I was lucky to have the arthritis diagnosis first as its easier to diagnose the fm when it comes after. She says its harder to diagnose fm just on its own.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Additional diagnoses?

Postby Theresa34 » Fri Oct 17, 2014 11:05 am

Ps I have the cfs lable attacked to my fibro diagnosis x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Additional diagnoses?

Postby Asleep » Fri Oct 17, 2014 11:20 am

Thank you all for your thoughts.

I suppose I am really looking for other support options or medications, but maybe I have already tried everything that is appropriate. Reading the forums I can't see many things that I haven't tried.

"fibro having fun at your expense" :-D That and the side effects of the drugs!
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Re: Additional diagnoses?

Postby FluppyPuffy » Fri Oct 17, 2014 1:45 pm

I have both the FM and CFS cards in my collection, and for me there are differences between the 2 conditions, albeit very subtle ones. Whilst there is fatigue relating to FM, when Kevin {the purple minion that represents my various health issues} decides to turn things up even more, there is an extra heaviness added to what I already feel, as well as an extra achyness which then brings along overwhelming waves of fatigue which leave me unable to stand. If I'm lucky, I will have a buffer of a minute or 2 between the heaviness and achiness being followed by the fatigue where I can get myself somewhere I can be sat or laid down. If not, then when the fatigue hits, as it is so strong, getting myself somewhere "safe" is almost an impossibility, meaning I'm likely to end up on the floor in a heap.

When comparing it to the fatigue I experience with FM, altho I am constantly exhausted, the limb heaviness and achyness isn't anywhere near as pronounced, probably because they have been steamrollered by Kevin turning the hurtys all the way up to 11 instead.

When it came to being dx'd, it was treated as if was something new and different, separate to the fatigue that Kevin turns on when he presses the FM buttons. After blood tests I was called back into see my GP, who told me that Diabetes was the next card I was going to have added to my collection, and that this could be the cause of the fatigue I was experiencing. Unfortunately, despite a diet and exercise approach helping to a degree with my additional sweetness, it did absolutely nothing to help improve the fatigue. So I was eventually given the CFS card to add to my collection as all other possibilities had been investigated and discounted.

From this point I was referred to the CFS/ME Service covering the area where I live. Thru them I was able to access a number of sessions where I learnt how to factor this additional depth of fatigue into each day.

To me, whilst the additional dx's have helped explain the extra symptoms and problems I was experiencing, I can't really say if they have made a difference to accessing additional treatments, supports etc. Whenever something new has come up for me, referrals have been made as a matter of course, I haven't had to ask, let alone push for anything, something for which I am very grateful for.

If you feel that CFS/ME may be something that is affecting you, then it is something that needs raising with your GP first. To try and help with this, keeping a diary for a while may be something to do. It was diary keeping that helped highlight the subtle differences I experience which denotes {for me at least} which part Kevin has decided to chuff about with.
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Re: Additional diagnoses?

Postby keaedmondson » Fri Oct 17, 2014 6:20 pm

Thanks gracious and fluppy!
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