hi I was taking iron bisglycinate but still getting RLS in my lower trunk and upper body and I suffer with BFS too slightly different symptoms but they definitely interplay
Anyhow the Gp wanted me to try ferrous fumurate as iron level not moving much at all
The GP had asked me to wait re the medical cannabis to see if the Topamax and Pregabalin work but I’m still getting day and night RLS symptoms, a feeling of a lump in my throat and nerve pain from surgery. I’m twitching jerking more and generally more agitated and needing to wee about 5 times in night since starting the fumurate.
Utter nightmare
Ferrous sulphate which I bought privately at a 200mg dose didn’t do this when I tried that a few months ago so thinking I’d just ditching the fumurate and cycling between the ferrous sulphate and bisglycinate.
Is there a huge difference between the two?
Also diet - I’m noticing anything spicy at all sets mine off bonkers
But if I eat an omelette for dinner symptoms at only 50 %
I’ve decided to fast 16 hours each day and drink herb teas
I’m trying to eat only single source foods so will keep you posted how this goes after a few weeks. And have started doing light weights back at the gym in the hope of sorting the hip dysfunction and SI joint pain surgery had lumbered me with.
although right now I’d wrestle someone for a biscuit!! The craving is real!!
I was hoping that all this nonsense that happened post hip surgery might settle down but it looks like it’s here to stay. So I’m now working out how I live with this long term like some of you utter heroes in here do.
I think a bup patch might help as dihydrocodeine seems to help and help the pain in the still poorly right hip so maybe it’s another trip back to Prof Evangelou my neurologist.
Is there any guidelines on dosage for the bup patches also I’m a bit worried as had an awful reaction on tramadol coming down off it after a finger amputation 7 years ago it sent me into a full blown psychosis.
thanks for listening as always
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The only difference between the various iron compounds would be the side effects. The amount of elemental iron is whats important and taking more than 85 mg does not result in more absorbable iron. Your 200 mg of ferrous sulfate only gave you 40 mg of elemental iron which is not enough. The ferrous fumerate if 310 mg has 100 mg of elemental iron. If 210 mg has 68 mg elemental iron. The amount of elemental iron in iron bisglycinate is the same as the mg of the pill.
As far as I understand, there is also different absorption rates. Absorption of iron is generally very low and iron bisglycinate (combined with vit C) seems to be the best in this respect. Also, it is important to take it once a day at most, as there is a feedback mechanism that reduces m the absorption for at least some 24h.
Thanks for this Lotte I’m trying to get my timings right I need to be stricter with my evening meal time so I can get the timing of my iron just right. Last night I ate earlier took the iron later but I did go to bed an hour later than usual and it seemed to work better
I’m so grateful for everyone jumping in on this as all advice right now is so welcome 😊
I’m sorry to hear about your struggles. Are you taking Vitamin C along with your Iron. I am currently taking oxycodone, Klonopine and Baclofen, but I still have episodes. Study up dietary recommendations, such as avoiding sugar, as well as simple carbohydrates. Also, you need Magnesium Glycinate to help relax your nerves, as well as overall health. No caffeine! Good luck!
Hi Zena, you are my star member of the Ironman Club. When did the iron at night trick stop working for you? I see you take it at 6pm. That’s early if you’re going to bed hours later. And it really only works if taken on an empty stomach. It sounds like your ferritin is going in the wrong direction? Once again, you will absorb the iron better if taken later at night (when hepcidin is lower) and when your stomach is empty. As a last ditch effort you can try “heme” iron which comes from animals. Proferrin is a good brand. Some people feel heme iron is superior to non-heme iron for us carnivores.
it worked for around 3 weeks then it started creeping back in
My problem is my evening meal time can vary midweek between 7-8.30 weekends 7.30-9 and because I’m on esomsprazole at minute due to gastric ulcers I started taking the iron earlier to ensure on an empty stomach as the food seems to hang round longer now since being in the ulcer meds
Maybe I need to think and try hard to structure eating earlier so I can take iron last thing ?? I normally go to bed around 1030pm
I’m also interested in the heme iron angle thanks for replying
I am so Sorry to hear your case is very severe it absolutely sucks doesn’t it.
Having just RLS would be bad enough but BFS and nerve pain too is literally doing my head in right now but I’m determined to live my life as I loved my life prior to all this happening and refuse to let it steal my joy.
The meds help with some of it, but I still struggle with symptoms. I’m not familiar with BFS. I have RLS and PLMD. And now I have injured my back, as a result I’m struggling with a pinched nerve up my entire left leg. I completed PT, but it’s still not under control. Taking Tylenol for that at night. Kind of sucks. Take care. WT
One trick that helped me was taking Vitamin D. Vitamin D helps iron absorption. Vitamin D blocks hepcidin which is the bodies response to iron. Feel free to read more about it.
When taking Vit D, you also need K2, as well as Magnesium Glycinate, I take a good quality fish oil supplement along with it. Research K 2 for more information, as well a magnesium supplements.
Fab thanks for this I take a krill oil supplement and am putting an order in with British supplements for their mega magnesium which has glycinate plus malate and Vitamin D plus K2,now on your advice. My BFS twitching is off the chart today
I took a Cosmocol sachet earlier as occasionally the iron makes me constipated and thinking that’s flared the twitching up
Me again. I also meant to ask about your BFS. I saw that at one point you were taking Topamax for “seizures and migraines.” Do you have a seizure disorder? Could the surgery have triggered something? Have you been tested for an auto-immune condition? Could there be an “impingement” (psoa muscle?) in the hip area - I ask since you said you have nerve pain there. Did you have Covid around this time? Just some random thoughts.
Yes I’ve wondered about the impingement too as the hip is actually getting more painful since surgery and I deffo have neuropathy type pain now in the right leg so I think a trip back to the surgeon is in order
Re Topamax yes I’ve had seizures since the age of 40 I’m now 51 but also a vestibular migraine sufferer hence the Topamax which I do feel helps a little at night I’m only on 25mg of it now so a v low dose
Covid I caught 2nd march after my wonderful other half bought it back from Japan as he’d been working over there. symptoms started mid Feb but ramped up after the Covid.
Autoimmune wise I’ve been tested for lupus negative
Hmmm, your symptoms could be caused by any of these? I too tested positive for antiphospholipid syndrome, though I am seemingly without symptoms. Yes, go back to your surgeon. I’ll try to connect the dots.
ooh meant to mention I occasionally get the lividoreticularis rash with the antiphospholipid and have it atm
I also have 2 gastric ulcers had an endoscopy about 5 weeks ago hence the esomaprazole but think they happened due to the shed load of naproxen I’d been taking for the hip
Exactly this - this is what the rheumatologist said to me …. But I’ve had high numbers before with my antiphospholipid test but no bfs but was generally unwell with the rash my numbers this time since surgery have been higher
It’s like my body just went crackers after surgery
My body went crackers after delivery. Sed-rate shot up over 100. Had high fevers, inflamed gall bladder, aches and pains everywhere and swollen feet. They thought I had an infection. I was given a ton of antibiotics, which rightly or wrongly so, I believe led to interstitial cystitis. Then they realized I had high ANA. Took me two decades but I finally drilled down and my rheumy discovered the APS. My numbers may have been positive for this my entire adult life and who knows if that’s what caused the strange reaction post delivery. I never miscarried or had clots which are the hallmarks of APS. Ever thought about trying a natural blood thinner like vitamin E? Sticky blood can do strange things to the body 🫣
Omg what a nightmare for you and Deffo my AP lipid was originally picked up after 3 miscarriages at the recurrent miscarriage clinic but my numbers much lower back then . Then I fell really ill a few years later got the Lacey rash my GP instantly said your anti phospholipid is playing up and sure enough numbers were higher
now after the double hip surgery BFS and RLS and just generally feeling really unwell since and a much higher number (they call it a strong positive but it’s the highest reading I’ve had)
Deffo the trauma of it I think has triggered it off again
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Question about Ferritin level of 14.
Severely weak. Can I try heme iron peptides?
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