THE PHOSPHATE RETENTION THEORY RE: SMALL, HARD LUMPS

[AsheleyGreen]

Hi All,

Was just wondering if anyone has an issue with hard lumps? Mine seem restricted to my abdomen and thighs. They are very painful to the touch, almost like if you had just been stung by a bee. During my never-ending research on fibro and fibro issues, I came across this site by an Israeli doctor. What he is saying about these lumps makes so much sense to me. In researching my lumps prior to this, all I could find was that these lumps were Lipoma, but this did not seem to match as they say these are soft and painless. I do believe there is something very credible in his assertion that many fibro sufferers have issues with phosphate retention. Even more compelling was the fact that my blood test came back and indicated a problem with my kidneys. My doctor has yet to expound on that but I do think there is a correlation. He also has a wealth of info on fibro. Certainly worth a visit to the site..

p.s. I also have Underactive thyroid (hypothyroidism) which he explains thoroughly how it is related to fibro.

fibrokur.com/P323/

[desquinn Partner Volunteer FMAUK Trustee]

only clinical trial into GUAIFENESIN so far found it not to be effective. As yet there have not been any further trials to my knowledge.

[AsheleyGreen in reply to desquinn]

I'm really focusing more on the Phosphate retention issue as the title indicates. I never referred to GUAIFENESIN.

[LoneEra in reply to AsheleyGreen]

I think Des is just questioning the legitimacy of the theory (and article) based on this: “Dr. Paul St. Amand believes that fibromyalgia is caused by an abnormality in phosphate excretion by the kidneys due to a genetic defect. Because GUAIFENESIN treats successfully all the symptoms of fibromyalgia, it seems evidence that it addresses to the underlying cause.”

That second sentence is quite a claim.

But no, I don’t have any experience of lumps so can’t comment more generally.

[desquinn Partner Volunteer FMAUK Trustee in reply to LoneEra]

It was also the last line and was in a bit of a rush

"Only restoration of normal ATP production can reverse this errant metabolism. GUAIFENESIN is designed to restore energy production by releasing the body from biochemical blockage which is genetic in origin and specifically targets the kidney."

[LoneEra in reply to desquinn]

Didn’t even read that far 😉

[desquinn Partner Volunteer FMAUK Trustee in reply to LoneEra]

I have a bad habit of reading from the end of articles

[AsheleyGreen in reply to desquinn]

Maybe as your role as an Administrator, you should perhaps read the article from the beginning, lest you miss some pertinent information the poster is trying to get across. Just a thought.

[desquinn Partner Volunteer FMAUK Trustee in reply to AsheleyGreen]

perhaps you misunderstood my meaning. My habit* is that I can read from the end of an article. I had indeed read the whole article as well as many other articles related to GUAIFENESIN, phosphates, the bennet clinical trial and some other relevant information.

But mine is just an opinion on the content that you are welcome to ignore.

*I read clinical trials from time to time so I tend to read intro, conclusion (at end) and then go back to the middle if relevant. Saves me some time and extends to articles of this nature.

[AsheleyGreen in reply to LoneEra]

Why even bother replying with this?

[LoneEra in reply to AsheleyGreen]

Because I feel it’s important to contribute to the community - and to point out where articles may not be entirely accurate.

[AsheleyGreen in reply to LoneEra]

"Didn’t even read that far 😉" You said you didn't even read that far - therefore, maybe you should have.

[LoneEra in reply to AsheleyGreen]

Because I saw inaccurate information very near the beginning of the article. And as a journalist, this taints the credibility of the whole piece for me. So no, I didn’t read to the end. I had already seen enough to form an educated opinion.

Just because that opinion differs from yours does not mean it is wrong.

[Dizzytwo in reply to AsheleyGreen]

Please be aware rudness to other members or admin will not be tolerated on the forum. Please try and moderate your tone. Thank you.

[crazycrafter in reply to AsheleyGreen]

Dear Ashley,

I'm with you all the way on this! When I see anything of interest, I will read as much as I can about the subject and often research further before I draw my own conclusions.

I've been on the site you mention and found it extremely interesting so thanks for that!

I have the same symptom as you which has been diagnosed as "limpoma" and rejected as of no significance by my GP and overlooked by other medics. In actual fact , these lumps are of great significance to me as they hurt if pressed even only slightly and have existed on my back, arms, legs and tummy for as long as I can remember. I didn't associate them with fibro until now! When researching , all I could find was a condition called "Dercum's Syndrome" , quite rare but not related to fibro.

I'm now going to do further research and hope if anyone else has these symptoms to please let us all know here!

[ChilledBee in reply to crazycrafter]

Hi Crazycrafter - I am so sorry for the long delay in responding to your post. Sometimes I just go through phases where I really just give up on doing any more research on my condition as I just do not have the energy for it. I am thrilled to find somebody that can relate to "these lumps" . I still have them - they are still just as painful, and I haven't found any more info on them. I sincerely hope you are well.

[debbiemorry in reply to desquinn]

Hi. Guifenesin helps a bit .

[ChilledBee in reply to debbiemorry]

I am in England and found it incredibly difficult to obtain Guaifenesin. I finally bought some from the US (very expensive). Unfortunately, the products were endless that would interfere with the efficacy of this i.e. anything containing mint - and anything containing Salicylate-which were overwhelmingly numerous. It was just another product that I gave up on due to the extensive research on everything I used or consumed.

[Whiteclouds]

Hi AsheleyGreen thanks for your input I have a small had lump in my stomach area just under my ribcage and I cannot touch this as it is very painful I’ve also found one under my right foot same issue too painful to touch thankfully it’s in the arch so does not come in contact with anything. I was wondering what these were. I haven’t been to see the doctor as he probably thinks I’m a hipochondriac . I too was told some years ago I had a slow thyroid. This all makes sense.

[ChilledBee in reply to Whiteclouds]

Hi Whiteclouds. Those are probably the same lumps I refer to in the original post, as I too have a few in my stomach (and in my outer thigh area. They are super painful when touched even in the slightest way. I have never heard of another person having these except for those with fibro. My doctor had no clue what they were either. I am convinced that there is a link with these and fibro. You also mention your slow thyroid. I am on Levothyroxine daily but my exhaustion levels are incredibly bad. Just writing this message is an effort - I know that sounds crazy, but it is. I just wish there was more funding for this as it is such a debilitating condition for millions of people (especially females) x

[Whiteclouds]

Hi yes it is debilitating I’m not on any meds for fibro or thyroid as I’m already taking meds for my heart and lungs. If only some of the medical doctors had this condition then I’m sure more would be done for us.

[ChilledBee in reply to Whiteclouds]

If only. I have yet to find one doctor that has ever seen or heard of them before.

[Adlon57]

I have had hard lumps on my legs, arms, trunk of body, and hands, growing on my nerves underneath my skin, grow from grain of rice to size of a walnut [on my spinal cord], I have had three surgical operations, thankfully I am now aged 65, these lumps or schwannomas, turn gelatinous, on my nerves below my skin! Starting aged 14. I have what is termed Schwannomatosis or NF3![Neurofibromatosis]

[ChilledBee in reply to Adlon57]

That sounds really uncomfortable to have to deal with, especially from such a young age. I just don't think that the medical community seems to know what causes these lumps or how they can be treated. Doctors just scratch their heads when I present myself to them and show them.

[Adlon57 in reply to ChilledBee]

I am the only person in Ireland with this particular condition, it was not until 2017 that it was finally diagnosed. I have a specialist for it. Even my GP was calling them abscesses until 2019! I had reactions to the AZ vaccine last year [then treated like a lab. rat🥴🙄 with the various tests scans etc]

[ChilledBee in reply to Adlon57]

That is just incredible. I see it took a long time for a diagnosis but at least you finally got one which is all we want. It took me 5 long years before i was diagnosed with Fibro. Quite a few people know had adverse reactions to the AZ vaccine. All we want is to be well.

[Adlon57 in reply to ChilledBee]

First signs aged 14, in 1970, told in 2006 diagnosed as Neurofibromatosis NF2, then in 2016 tested for Schwannomatosis NF3, diagnosed 2017, WHEW! First categorised as a medical condition in 1973. I knew in February 2021 when first AZ vaccine, knowing my luck🙄I would have an adverse reaction? Day after, in A&E suspected COPD symptoms [heart flutters] downhill from then 🥴