I’ve tried rheumatologists, you tell me what you think - is it Fibro or not?

[Sophieb33]

Hey there!

If you are reading this, thank you. If you respond, thank you even more.

It’s been a roller coaster. It’s been 3 years of still trying to figure it all out. Here’s my story.

3 years ago I left my job. I constantly complained of my whole body swelling up (could be water retention, not sure). My arms, my legs, my stomach, my breasts..everywhere. Clothing was uncomfortable to wear if it was fitted, including a bra. My legs ached. They ached because they felt so swollen. Then the fatigue came too.
I initially was diagnosed with fibromyalgia but I was always unsure of the diagnosis.

Leaving my job had to happen because I couldn’t get out of bed because of fatigue, and my whole body was swollen and aching. I also developed panic attacks at that point in time too.

As of today, I only get a bit of aches around my legs but it’s more swelling constantly, and fatigue. Maybe pain is reduced because I’m not working anymore and able to rest, I’m unsure. But I’ve continually complained of swelling. Rheumatologist say that bloods don’t show swelling..so I’m assuming it’s water retention. I’ve seen 3 rheumatologists all up. The first one says fibro, second and third said no when they press on points etc. I don’t feel like I’m in some excruciating pain or anything, just my lower legs ache when they feel swollen..which now, seems all the time.

I’ve tried gastroenterologists, dietitian and now an endocrinologist. No one knows. I cut out fructose and sugar, all my swelling went away and felt incredibly except mild fatigue (still struggled in the mornings, can never get up before 8am really..but I do go to bed about 10/11pm). I was doing great on this diet for 3 weeks..then slowly over 5 days..swelling started happening again and fatigue got worse..and then the leg aches occur etc.

Ontop of all this, I have brain fog sometimes coz of the fatigue when it’s quite bad. But I am constantly swollen. I don’t get it. If specialists can’t figure it out, how can I? It felt so amazing for those 3 weeks - I could fit into my clothes again, comfortably. I felt sexy and confident again. Now I’m back to swollen.

Please note, when I say swollen, as I said, it could be fluid retention. I don’t know. Blood tests show negative inflammation so I don’t know if that means no swelling. I have no idea

What are your thoughts? Please be kind. It’s been 3 years of hell and depression kicked in too. Thank you if you got this far, I’m very broken and confused these days.

 

[sunkacola]

Hello Sophie and welcome to the forum.

second and third said no when they press on points etc

The pressure point way of diagnosing fibromyalgia is outdated and has been thoroughly debunked as a diagnostic tool, so those doctors are behind the times. It is a fallacious method because most of us with fibro will react differently to various pressure points on different days or even in different times of the day.

Swelling you describe is not a common symptom of fibromyalgia. If it is water retention, then there is still a reason for that to be happening and it would be worthwhile to discover what that reason is.

legs ached. They ached because they felt so swollen.

If in fact your legs are aching because they are swollen, this may not be fibro but something else. However, I can't help but wonder if the swelling is actually causing the aching or if it is correlative rather than a causative effect. This is another reason that exploring the swelling would be wise.

the fatigue and brain fog are definitely fibro symptoms. Now, whether fibro is the correct diagnosis for you or not is not possible for us to say. But my feeling is that if you treat it as if it were fibro, you cannot go wrong in any case. There are so many different ways that fibro manifests in people that no two of us have the exact same experience of it although of course many of us share many of the symptoms.

I suggest that, especially since you noticed some advantage, however brief, in changing your diet, you would benefit from approaching this the way I recommend people with fibromyalgia manage this syndrome. Even if you don't end up with a definitive diagnosis of fibro (which you may or may not, but you still have a physical problem either way), these suggestions will help you.

If you went back to eating sugar once the swelling came back, I still recommend you stop eating it once again. And here is my post of advice for managing fibromyalgia. The best thing you can do for yourself is improve your overall health, mentally and physically, and these ideas will get you started. I wish you the best of luck, and if you have questions please ask. Let us know how you are doing. We are here to be supportive. This is a polite group of people who want to help each other, and anyone who is unkind towards you will get censored, so don't be afraid to tell us how you feel and what is going on.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[fimi]

Hi Sophie and welcome!

Please be kind. It’s been 3 years of hell and depression kicked in too. Thank you if you got this far, I’m very broken and confused these days.

Please don't worry, you've found a good place here that will support you and empathize with all you're going through. We've all had similar ups and downs and try and help each other out the best we can. Sometimes even a chat can help how you feel.

 

[JayCS]

my whole body swelling up (could be water retention, not sure)
I initially was diagnosed with fibromyalgia but I was always unsure of the diagnosis.
As of today, I only get a bit of aches around my legs but it’s more swelling constantly, and fatigue.
Rheumatologist say that bloods don’t show swelling..so I’m assuming it’s water retention.
don’t feel like I’m in some excruciating pain or anything, just my lower legs ache when they feel swollen..which now, seems all the time.
I’ve tried gastroenterologists, dietitian and now an endocrinologist.
I was doing great on this diet for 3 weeks..then slowly over 5 days..swelling started happening again and fatigue got worse..and then the leg aches occur etc.
If specialists can’t figure it out, how can I?
Blood tests show negative inflammation so I don’t know if that means no swelling. I have no idea

Hi Sophie, I agree with yourself and sunkacola that your description sounds more like edema / anasarca than fibro. If your clothes become tight, it does sound as if the swelling is real and not a feeling caused by the pain. All other symptoms could also be explained by the swellings. Do the docs exclude edema / anasarca for some reason? If not:

• Does your skin retain "dimples" / "pits" when you press on the swellings ("pitting")?
• Do your swellings ever "leak"?
• Liver, kidneys and diet were all OK?
• What about your heart (another typical cause of anasarca)?
• What about lung/chest problems - pulmonary edema?
• Could it be allergic reactions?
• Any meds that might be causing it?
• Bloods checked for alpha-thalassemia (rarer genetic)?
• Have you tried reducing salt?
• Did you try meds to reduce the swelling? (not that I'd recommend that before being sure about the cause....)

There are many reasons why specialists can figure things out, the most common is our body being so complex that their specialization can only be on one area. I've spent all my life figuring my body out myself and only rarely could / can specialists help.

Hope that helps...?

 

[sweetkamie20]

Hey there!

If you are reading this, thank you. If you respond, thank you even more.

It’s been a roller coaster. It’s been 3 years of still trying to figure it all out.

We totally get the struggle to find solutions (I am still looking) and the slowness of the journey. No judgment whatsoever!

I initially was diagnosed with fibromyalgia but I was always unsure of the diagnosis.

The first one says fibro, second and third said no when they press on points etc. I don’t feel like I’m in some excruciating pain or anything, just my lower legs ache when they feel swollen..which now, seems all the time.

It's true: 2/3 of those doctors are behind the times. Fibro doesnt always result in tender points. Tender points were, years ago, the "telltale signs" doctors relied on. Now the up-to-date docs know better.

It may help to clarify what the newest research shows about fibro. It will demystify/shed light on why symptoms vary person to person.

The blessing of approaching things the way sunkacola said is that you will get a head start on managing things while you wait for some diagnosis. Whether the diagnosis is fibro or not those tips will likely provide clues as to how to feel better.

On another practical note: my doc thinks fibro resultef because I have some heavy toxin overload. Docs dont often test for toxins like metals, etc but there may be some insight for you if you get tested.

What are your thoughts? Please be kind. It’s been 3 years of hell and depression kicked in too. Thank you if you got this far, I’m very broken and confused these days.

I hope you get more traction towards feeling better soon. Progress towards feeling better can also help resolve the depression.

Its safe to be authentic here. No judgment. If anyone is unkind you can count on people to defend you and the person to be handled appropriately.

Welcome

 

[JayCS]

I have some heavy toxin overload. Docs dont often test for toxins like metals

Yep, I think it's only functional docs (US) / naturopaths (UK) that do this, as it doesn't have medical evidence. But still interesting, as you say.
I had some (spooky) bioresonance done for heavy metals, teeth and other toxins, no help though.

 

[sweetkamie20]

Yep, I think it's only functional docs (US) / naturopaths (UK) that do this, as it doesn't have medical evidence. But still interesting, as you say.
I had some (spooky) bioresonance done for heavy metals, teeth and other toxins, no help though.

My regular doc is a little avant garde compared to usual docs...i havent done the metals tests yet because theres some steps I have to wait to on...

I have done lots of (spooky) electrodermal screening to see root causes but, to be honest, I am over it except that my husband and his family really believe in it.

I have to say I bought into it because 6 months before I started having seizures its results showed my neurotransmitters were in very very bad shape. Also, its built off acupuncture therapy and I do know that is useful.

Electrodermal therapy's limitations are in its resulting recommemdations for supplements. The machine pinpoints certain remedies and quantitities of such but my first experiemce with its remedies actually triggered the worse flares ever and ever since then (8 years ago) fibro symptoms are more severe and more frequent. So, I take everything it says with a maybe attitude, try out some recommendations and quit as soon as there is "trouble in paradise".

Is this bioresonance built on typical acupuncture models or ised by chiropractors/acunpuncturists?

 

[JayCS]

Is this bioresonance built on typical acupuncture models or used by chiropractors/acupuncturists?

Neither. But to me an electrodermal gadget looks the same - like the Scientology 'Radionics' gadget. But instead of putting it on meridians you hold things in one hand, and your skin reaction holding the metal rod in the other is "measured". I'd think in both cases it's hocus-pocus plus placebo, but my practitioner was a nice woman and had better ideas whilst "testing" me than my docs, and also harmed me far less. One idea was really brilliant (different drinks for better bladder). Similar to it "showing" the connection of neurotransmitters - which doc explains that to us?

 

[sweetkamie20]

the Scientology 'Radionics' gadget.

yikes! well, i know thats bunk. his parents are super into it becausehis dad got epstein barr a d it was the only thing that caught that...

better ideas whilst "testing" me than my docs, and also harmed me far less

Yeah, docs dont have many tricks up their sleeves do they. at least with electrodermal screening you are being treated by an RN that only points to supplements and the like. in the end supplements arethebest bet...

One idea was really brilliant (different drinks for better bladder). Similar to it "showing" the connection of neurotransmitters - which doc explains that to us?

And this is where I say you are like a committee of docs i trust you more than any of them. (sorry to all the good docs out there.)

we just keep trying, seeking, til we find. docs, naturopaths, friends, whatever! maybe theres a good idea in unexpected places. we just stay open until we find!

 

[JayCS]

yikes! well, i know thats bunk. his parents are super into it because his dad got epstein barr and it was the only thing that caught that...

Well, why not: cold reading can be very useful... but can also be abused... so we can use it, but warily.

Yeah, docs don't have many tricks up their sleeves do they. at least with electrodermal screening you are being treated by an RN that only points to supplements and the like. in the end supplements are the best bet...
And this is where I say you are like a committee of docs i trust you more than any of them. (sorry to all the good docs out there.)
we just keep trying, seeking, til we find. docs, naturopaths, friends, whatever! maybe theres a good idea in unexpected places. we just stay open until we find!

Yep - 2 years ago I estimated the ideas of my friends to have contributed around 50% to what was then helping me (cryotherapy, resulting in acupressure, Wim Hof cold showering & breath-holding. back "yoga" exercises), then my own ideas and forum ideas, docs only 10%.
Now that's all still a passive / occasional part of my toolbox, but as you say it's 100% us that keep on trying...
I spose my stance is working at it "200%", because I enjoy thinking about the problems & questions of others, which always helps me see my own issues in a new way, sometimes upturning something I'd neglected, occasionally new.

 

[Forgetmenot]

Did you no the pressure point scale is rubbish.i didn't have pain I'm mine ,and I have fibromyalgia. I also have really painful lower legs and swollon feet.i don't get tired as I do pain.yet there are folk here who are tired all day long and don't get pain.
You can't put fibromyalgia in a box and tick yes.
Bare in mind Dr are human and they get things wrong..do I thunk you have fibromyalgia. Yes I do .but my opinion means sod all .And you should definitely keep at the Dr until you get an answer.

 

[TJB]

Hi,
Edema, swelling, can occur with lack of body moving. Even with severe fatigue, feeling unwell, its essential for movement to avoid this. I don’t know if your mobility has been impaired, or huge amount of resting is part of what you are dealing with.

Rheumatologists…..I’ve seen excellent ones and not so. It can be so difficult to get across to them what’s going on too.

I’d say, give up sugar, natural sugar in fruit etc should be ok. Consider allergies?

I do hope you get sorted x

 

[sweetkamie20]

I spose my stance is working at it "200%",

Perhaps there are so many “others” that you could reasonably assess your investment at 500%…you are consistently evaluating new cases here

 

[Charz]

The swelling is a concern. Your primary was no help with testing?