This edema of my body is really upset... - Myalgic Encephalo...

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This edema of my body is really upsetting and gross.

Ihatedrs40 profile image
13 Replies

The past 7 months or so, I've been having edema on my whole body. I wake up with a swollen face,belly,legs,feet,kankles and just really bad. Now, it's really bad the past 5 days and pitting. I've told my assh*** doctor about it and he's done nothing except see a counselor! ! Looking in the mirror makes me want to cry. Wondering wtf is wrong with me. I drink alot of fluids but don't pee but twice a day and up a million times during the night to go. My left kidney kills me at night and going pee relieves the pain. I have a bad feeling about the severity of my edema. Took cold baths and raised my legs to see no change. It hurts and can't fit any of my clothes. . I'm at a loss here..

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Ihatedrs40
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13 Replies
secondhandrose2 profile image
secondhandrose2

Hi

I also get oedema so know how uncomfortable it can be and that it feels very unsightly. Oedema means you are retaining fluids and often that is linked to salt intake so the first thing might be to ensure you don't have an excess of salt in your diet, that might be hidden in some foods just as sugar is in many foods that we don't associate as being sweet. You could google oedema and see what dietary changes are suggested there.

As I also have some varicose veins my GP referred me for a doppler test after which the specialist nurse prescribed elastic stockings (which I will never wear despite being a pensioner). The GP suggested I might need water tablets as and when needed, but the first move would be for you to have blood tests to check everything is normal - the GP said mine were all normal. However I have a lot of other symptoms so had private blood tests earlier this week and am waiting for the results. You might have a kidney infection - I would google that to check for symptoms and if you think perhaps you have then you could go to the nearest walk in centre - I have always found the triage and follow on nurses there have more time and can do a more in-depth assessment as long as you don't play them off one against the other with your GP. Go when you have had the pain and tell them about that, then gently bring in the history and just tell them you are concerned in case it is an infection. You might ask if it could be kidney stones as they can be painful too. I don't know whether oedema is a symptom of kidney stones but it may well be. The other thought is whether you might have any of the other symptoms of developing diabetes - you could google that and if you think it is possible then you could ask your GP to do bloods including fasting sample.

I am exactly the same as you regarding ongoing oedema, some clothes don't fit, boots and shoes especially are a real problem - but if you are continuing to get pain that definitely needs investigating via your GP who can check your bloods and if they show nothing then they can refer you for a scan to rule out kidney stones, if nothing then refer you to a renal specialist.

Suexx

That to me is gross negligence the oedema and pitting may be nothing yet it may be something - your Dr has a duty to investigate. If I spoke to a DR about oedema and (s)he told me it was anxiety I would be writing a complaint:

nhs.uk/choiceintheNHS/Yourc...

that is beyond unacceptable - its down right ignorant and imho I would get away from that person ASAP - from what you are saying they do not appear to be at all interested in your well being - Jebus this angers me! When I told my wife this she was gobsmacked that this was not being addressed, (20 years as a nurse).

Please seek help from a proper Dr and not the quack you have been seeing.

secondhandrose2 profile image
secondhandrose2 in reply to

Rather than writing a complaint it would have been more productive to discuss with the GP the reasons for his thinking. Behaving so angrily rarely brings a positive outcome in healthcare, it just gets people's backs up surely.

in reply tosecondhandrose2

Ihatedrs40 has been having problems with Drs for a while and for a Dr to ignore something potentially life threatening - regardless of what reason they have is to me unforgivable.

I am seeing more and more how Drs who can't be bothered to invest time in their patients ignore or dismiss severely life limiting symptoms. These people are not doing their job - end of story and I can tell you I work in the health field and if I discharged my duties the way some Drs are I would be fired plan and simple there would be no chat to ask why I am ignoring things I would be gone - and rightly so!

secondhandrose2 profile image
secondhandrose2 in reply to

I agree medics can sometimes seem to be ignoring symptoms but it is very unlikely that your symptoms are life threatening.

You sound very angry, like you are about to explode, so it is interesting that your body is also behaving in that way. I am wondering whether there are other things that are causing such a high level of anger?

in reply tosecondhandrose2

"In some cases, however, edema may be a sign of a more serious underlying medical condition."

Taken from:

mayoclinic.org/diseases-con...

Its not me who has the oedema but you are right I am angry about Drs who don't care and add to the suffering of the people they are meant to help.

Since I have been diagnosed with ME my Dr seems to have completely written me off, and I had believed we had had a good relationship. And when I hear the stories on here it just confirms my dislike of Drs!

secondhandrose2 profile image
secondhandrose2 in reply to

In some cases headaches may be a sign of a brain tumour - but usally they are not.

It is important to hold onto the reality of the likelihood of something life threatening being wrong. I absolutely understand your anger with the medics, I would be angry too about that, I was just wondering whether there was anything else that could account for your bodily reaction, as psychological and physical aspects are both expressions of things happening in our bodies. x

in reply tosecondhandrose2

You are quite right about the headaches, however as said in mine and my wife's experience, (combined 46 years nursing experience with me having 25 in Mental Health), I have NEVER seen anyone with anxiety, (I worked in admission wards and ICU wards where people are at the apex of their condition and so anxious that they have stopped functioning), cause themselves oedema.

You are right our mental state is reflected in our body but I seriously doubt that it will cause this.

Regardless even if it is nothing it does warrant investigation and I have never seen it ignored or dismissed in such a manner.

secondhandrose2 profile image
secondhandrose2 in reply to

I agree, it should be investigated, and if it is not being then I would suggest returning to the GP and asking for an explanation of the oedema. If he is unable to give one then I would ask to be referred to a specialist - which the GP is not.

When thinking about psychological causes I was drawing upon my experiences of people making quite minor changes to their lifestyle which have resulted in major changes to their body. Often when we are anxious we wait for someone to explain what the symptoms are about rather than looking at whether our own way of living might be contributing - for example failing to drink sufficient water, eat a balanced diet, get regular but not excessive exercise, reducing stress, using social supports positively, etc. Physical symptoms do not only have physical causes, psychological factors contribute as well and need considering.

If I was experiencing oedema in many different parts of my body (not just getting puffy but also meeting the tests for oedema and remaining indented for a time after pressing, etc) then I would be concerned and would insist on investigation.

in reply tosecondhandrose2

I was advised to stop Gluten and that small lifestyle change drastically reduced pain, I know people who have given themselves ulcers and high blood pressure through nothing more than their minds. When I am tired and out of sorts I think more negatively and consequently get more pain.

HOWEVER I do not believe that the oedema is a result of the mind. It may be nothing more than the body's salts are out of whack due to diet or excess sweating even but it may just as well be something else no Dr under any circumstance should put this down to anxiety. I spoke with a consultant psychiatrist about this about 45 mins ago he just looked at me in disbelief. I'm not saying that he knows all but he does know a lot.

If nothing else the Dr should have reassured Ihatedrs40 and started blood tests, I can't even really comprehend how this has been ignored it flies in the face of everything I see Drs doing, (I have had the privilege of working with many dedicated Drs who would not ignore or play down things like this. The physical side is ALWAYS the easier option to treat and in my experience is the first thing done on admission to a psychiatric unit - all possible physical health implications are examined first, CAT scans/MRI/etc. The first thing we do getting them through the door, (after reassuring and supporting them) is getting bloods done.

I can only speak for myself and even though I have problems with my GP at the moment I know that that condition would be thoroughly investigated and not just put down to mental health, if he did ignore it I would never go to him again, but hey that's me!

Ihatedrs40 profile image
Ihatedrs40 in reply tosecondhandrose2

I am very angry. Because I just want to feel better, know what's wrong, have a Dr who cares and just being treated the way I have makes it worse. Nothing else really makes me angry tho. I guess not having any or enough money to make a Dr care makes me feel mad to.

Sick_and_tired_girl profile image
Sick_and_tired_girl in reply toIhatedrs40

If your doctor is prepared to ignore symptoms such as this, I think you urgently need to find a new doctor. Too many doctors buy into the lie that ME is a psychiatric disease, a theory peddled by pyschiatrists getting large consultancy fees from insurance companies. Your doctor is being lazy and negligent.

secondhandrose2 profile image
secondhandrose2

That I can totally agree with :)

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