TKR TKR with Fibro and Raynauds and RA, anyone else?
- Thread starter beralc
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@beralc
I 100% applaud your approach, which is essentially radical empathetic acceptance.
It's been how I face any temporary or permanent disability, and how I have advised friends and family with chronic pain or other issues.
If we frame it as the Other, an entity outside of us, an enemy, it simply empowers it. If I envision it as a part of me, it doesn't get to define me. Accepting and respecting it teaches me how to relax and live with it, to focus on everything I can do. That allows me to integrate this new thing into me and move forward.
I 100% applaud your approach, which is essentially radical empathetic acceptance.
It's been how I face any temporary or permanent disability, and how I have advised friends and family with chronic pain or other issues.
If we frame it as the Other, an entity outside of us, an enemy, it simply empowers it. If I envision it as a part of me, it doesn't get to define me. Accepting and respecting it teaches me how to relax and live with it, to focus on everything I can do. That allows me to integrate this new thing into me and move forward.
@mendogal yes agreed. I think you have to be ready to make that change. Like a lot of things we can know something is the right way to be it’s quite another doing it. Hopefully members here will get there in the end. I still occasionally fall off the path.
Just as an update I really feel the fall I had on Tuesday, has taken me right back pain wise. The knee has been painful constantly since then, really burning type pain, whereas I’d definitely got to a point before the fall, where there were many periods with virtually no pain. Unfortunately it’s also aggravated the left knee too(arthroscopy in Sept ‘24).
I suppose all the healing that had been started has been disrupted. I know the drill but it’s definitely frustrating.
I’ve got to book an appointment to discuss my blood results (re cause of anaemia), so hopefully will commence treatment soon.
Just as an update I really feel the fall I had on Tuesday, has taken me right back pain wise. The knee has been painful constantly since then, really burning type pain, whereas I’d definitely got to a point before the fall, where there were many periods with virtually no pain. Unfortunately it’s also aggravated the left knee too(arthroscopy in Sept ‘24).
I suppose all the healing that had been started has been disrupted. I know the drill but it’s definitely frustrating.
I’ve got to book an appointment to discuss my blood results (re cause of anaemia), so hopefully will commence treatment soon.
As it’s been some time since I did any nursing I wanted to pick your brains. I understand there are limitations to certain questions on a forum so I’m not expecting a diagnosis just your thoughts, if you can.
Had bloods done Tuesday had a message to make an appt to discuss results. I rang to see if they could read off results while I wait for an appt. I know it’s hard reading results in isolation but nothing was flagged when I had my pre op bloods done on Dec 18th.
Just thought we have different blood ranges for some things here v the States.
Ferritin 34
B12 is 250
Hb 108g/l
RBC 3.66
The Ferritin and B12 are stated as satisfactory but am I right in think they’re a bit borderline. Do you think that if the Ferritin and B12 are said to be satisfactory would you think the Hb and RBC levels are more likely the result of blood loss.
Had bloods done Tuesday had a message to make an appt to discuss results. I rang to see if they could read off results while I wait for an appt. I know it’s hard reading results in isolation but nothing was flagged when I had my pre op bloods done on Dec 18th.
Just thought we have different blood ranges for some things here v the States.
Ferritin 34
B12 is 250
Hb 108g/l
RBC 3.66
The Ferritin and B12 are stated as satisfactory but am I right in think they’re a bit borderline. Do you think that if the Ferritin and B12 are said to be satisfactory would you think the Hb and RBC levels are more likely the result of blood loss.
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I think you are probably right that the likeliest cause of your anaemia will be the blood loss from surgery.
I remember asking my surgeon about this, as at the time there was a blood shortage and some surgery was being cancelled.
He said that TKRs generally didn't need transfusions and the blood loss was less than for hip replacements. However, there definitely is some blood loss and I was slightly shocked by the extent of my bruising.
As you say, your ferritin and B12 are on the cut off- but probably not significant.
Ferritin levels can be higher in RA.
You might want to ask to be rechecked after any iron deficiency anaemia is corrected.
Do you have Patient Knows Best on your NHS app? It is really useful for seeing trends. It gives graphs of your blood results and you can see if there has been a sharp fall, or whether you were a bit borderline previously.
I just had a look back at my perioperative results. I dropped about one point from 13 to 12 on my Hb- which presumably reflected the blood loss.
I remember asking my surgeon about this, as at the time there was a blood shortage and some surgery was being cancelled.
He said that TKRs generally didn't need transfusions and the blood loss was less than for hip replacements. However, there definitely is some blood loss and I was slightly shocked by the extent of my bruising.
As you say, your ferritin and B12 are on the cut off- but probably not significant.
Ferritin levels can be higher in RA.
You might want to ask to be rechecked after any iron deficiency anaemia is corrected.
Do you have Patient Knows Best on your NHS app? It is really useful for seeing trends. It gives graphs of your blood results and you can see if there has been a sharp fall, or whether you were a bit borderline previously.
I just had a look back at my perioperative results. I dropped about one point from 13 to 12 on my Hb- which presumably reflected the blood loss.
Hi and thanks @EalingGran no I wasn’t aware of patient knows best. I’ll look into that as it will give a better idea of trends as you say. Does the PKB access my files for me to see results or do I put results in? Thanks again.
Edit: I’ve just accessed my NHS App and can see my results and history there. My Hb usually runs in the high 12s to 13.3 The side note alongside the Ferritin level reads;
Iron deficiency cannot be excluded in the
presence of concurrent infection,inflammation,
malignancy or liver disease. In the context of
these conditions, or anaemia being present,
suggest transferrin saturation to further
investigate.
Given that comment and these ranges below (used by NHS) I’m going to ask for Iron as I’m still very symptomatic.
15-29 ug/L: Indicative of low body iron stores
30-99 ug/L: Indeterminate ferritin. My Ferritin is 34 so on the low end of this range.
Edit: I’ve just accessed my NHS App and can see my results and history there. My Hb usually runs in the high 12s to 13.3 The side note alongside the Ferritin level reads;
Iron deficiency cannot be excluded in the
presence of concurrent infection,inflammation,
malignancy or liver disease. In the context of
these conditions, or anaemia being present,
suggest transferrin saturation to further
investigate.
Given that comment and these ranges below (used by NHS) I’m going to ask for Iron as I’m still very symptomatic.
15-29 ug/L: Indicative of low body iron stores
30-99 ug/L: Indeterminate ferritin. My Ferritin is 34 so on the low end of this range.
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Most of the hospitals I go to ( not private ones I don't think) load results directly on to PKB and the graphs come up automatically.
It can be really quick. I remember when I was in hospital with septicaemia, the doctors came round to discuss my elevated CRP and were shocked to realise that I already had the blood results on my phone! I also have my MRI and Xray reports in the app as well. Although there is a time lag for that ( presumably because they don't want patients seeing reports before GPs have had a chance to digest them).
I also get most of my hospital appointments on it as well.
I find it really useful as a record.
It can be really quick. I remember when I was in hospital with septicaemia, the doctors came round to discuss my elevated CRP and were shocked to realise that I already had the blood results on my phone! I also have my MRI and Xray reports in the app as well. Although there is a time lag for that ( presumably because they don't want patients seeing reports before GPs have had a chance to digest them).
I also get most of my hospital appointments on it as well.
I find it really useful as a record.
I had to start taking iron 6 weeks before my PKR surgery. It constipated me immediately. This might happen to you, so you might want to be ready to address that.
@EalingGran nothing on PKB yet but I’ll give it time.
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(I am having massive tech problems keeping me from being online more than briefly and making locating previous research results hard)
The currently used numbers on ferritin are really off.
There is a large and growing body of evidence that there exists a lot of clinical anemia creating chronic symptoms that isn’t reflected at all by hemoglobin/hematocrit/RBCs AND that physicians need to accept that there are one or two measures of ferritin that need to be tested for AND that current laboratory norms are markedly set way too low.
Looking up “low ferritin anemia NIH” is a good way to search as is an article I believe is titled “so you think you know anemia.”
The currently used numbers on ferritin are really off.
There is a large and growing body of evidence that there exists a lot of clinical anemia creating chronic symptoms that isn’t reflected at all by hemoglobin/hematocrit/RBCs AND that physicians need to accept that there are one or two measures of ferritin that need to be tested for AND that current laboratory norms are markedly set way too low.
Looking up “low ferritin anemia NIH” is a good way to search as is an article I believe is titled “so you think you know anemia.”
@mendogal thank you.
My brain is very foggy today, but from this I’m presuming you mean that the normal ranges are set too low and this is born out by people having clinical anaemia with so called satisfactory Feritin results?
Hopefully I won’t need them but I’ve got my questions all lined up for when I get to speak to someone tomorrow ideally.
Edit: Not had any luck finding the article you suggested but I’ll keep trying.
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@beralc very helpful post about accepting things as they are, not struggling, to gain some peace. It really gave me a lot of insight and has helped me today. One other thing about your labs- ferritin is a measure of iron stores not also an acute phase reactant, so it goes up with illness or inflammation so typically high postoperative.
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@Oldped thank you I’m so happy it has helped you. I’ll tell you I really struggled keeping my head up today and listening to my own advice. Just feeling so rotten with anaemia, but also because of how far back the fall on Tuesday has taken me in terms of pain. I literally didn’t/ couldn’t do anything today. Iced as able and Elevated and disturbed both my knees (left knee arthroscopy in September’24 has swollen too) as little as possible. So it’s been a tough one today.
Yes I’ve been doing a lot of reading today on Ferritin and acute phase reactant etc. several papers I read stated something along these lines.
Ferritin is also an acute phase reactant and can be elevated in patients with chronic inflammation or infection. In patients with chronic inflammation, iron deficiency anemia is likely when the ferritin level is less than 50 ng per mL (112.35 pmol per L).-
I’ll update after I’ve spoken to my GP. Thanks x
Yes I’ve been doing a lot of reading today on Ferritin and acute phase reactant etc. several papers I read stated something along these lines.
Ferritin is also an acute phase reactant and can be elevated in patients with chronic inflammation or infection. In patients with chronic inflammation, iron deficiency anemia is likely when the ferritin level is less than 50 ng per mL (112.35 pmol per L).-
I’ll update after I’ve spoken to my GP. Thanks x
@beralc
Just now catching up with you. I honestly have been too depressed to read much (or do much of anything). Ever since my surgery I have been scared to death of falling and making things worse, so I really feel for you. One step forward and 10 steps back, it must feel like. And when you have no energy to even try, it's even worse.
Everyone tells me that I'm doing fine for my 3 months in, but inside I just feel like I'm back to where I was 3 weeks in. I KNOW that's not true (more like 2 months in) but my fear is that I will not ever get better. I'm pretty much pessimistic in my outlook due to the last 4 years of horrendous health problems. I wish i knew how to be more accepting of the road we travel and just allow it to happen. DH has taught me some breathing exercises but even while doing them, I'm thinking "this is a waste of time". I'm so stressed by this and just can't seem to get myself to calm down. Time's a-flying and I'm still in the same spot.
Just now catching up with you. I honestly have been too depressed to read much (or do much of anything). Ever since my surgery I have been scared to death of falling and making things worse, so I really feel for you. One step forward and 10 steps back, it must feel like. And when you have no energy to even try, it's even worse.
Everyone tells me that I'm doing fine for my 3 months in, but inside I just feel like I'm back to where I was 3 weeks in. I KNOW that's not true (more like 2 months in) but my fear is that I will not ever get better. I'm pretty much pessimistic in my outlook due to the last 4 years of horrendous health problems. I wish i knew how to be more accepting of the road we travel and just allow it to happen. DH has taught me some breathing exercises but even while doing them, I'm thinking "this is a waste of time". I'm so stressed by this and just can't seem to get myself to calm down. Time's a-flying and I'm still in the same spot.
Hi All. Before today I’ve probably had the worst few days since the op and really it’s all down to the fall. My op knee is more swollen than at any time since surgery which is consequently harder to flex. And the left op knee I had last September has been as swollen as the right. I’d had to increase all my meds again and apart from walking couldn’t really tolerate exercise.
Today I’m just seeing some light. I’ve been elevating hour after hour day and night. I didn’t need as many meds today either. Although the knees are still swollen the Flexion is improving again strangely.
There’s been a mess up with the anaemia. They want more blood tests and I haven’t been able to get an appt before the 18th!! to discuss various abnormal results from last Tuesday’s bloods. I went ahead and ordered some iron which would arrive tomorrow, cos it’s so difficult doing anything with the way I’m feeling.
Although the PT was happy to wait until I feel better, to start, I think I will contact them this week, otherwise if I wait until I feel better, it could be another week or two before the iron kicks in.
Something quite odd has happened and I can’t help thinking my body just doesn’t know what on earth is going on. With the surgery the RA and Fibromyalgia flares immediately post op then anaemia and the fall, things are going crazy.
So I usually have a slightly raised TSH but normal T4 and have sub clinical hypothyroidism and Hashimotos diagnosed by accident when I had an MRI with a frozen shoulder. So I get my TSH done annually to keep an eye on things. So when I saw the TSH was raised I didn’t think any more of it, but then I noticed the T4 was raised!!!
This has never happened before, hopefully things will settle once I recover better.
Today I’m just seeing some light. I’ve been elevating hour after hour day and night. I didn’t need as many meds today either. Although the knees are still swollen the Flexion is improving again strangely.
There’s been a mess up with the anaemia. They want more blood tests and I haven’t been able to get an appt before the 18th!! to discuss various abnormal results from last Tuesday’s bloods. I went ahead and ordered some iron which would arrive tomorrow, cos it’s so difficult doing anything with the way I’m feeling.
Although the PT was happy to wait until I feel better, to start, I think I will contact them this week, otherwise if I wait until I feel better, it could be another week or two before the iron kicks in.
Something quite odd has happened and I can’t help thinking my body just doesn’t know what on earth is going on. With the surgery the RA and Fibromyalgia flares immediately post op then anaemia and the fall, things are going crazy.
So I usually have a slightly raised TSH but normal T4 and have sub clinical hypothyroidism and Hashimotos diagnosed by accident when I had an MRI with a frozen shoulder. So I get my TSH done annually to keep an eye on things. So when I saw the TSH was raised I didn’t think any more of it, but then I noticed the T4 was raised!!!
This has never happened before, hopefully things will settle once I recover better.
@westiemom yes I totally understand how you feel. It’s hard to see a way forward sometimes but I do think it’s important to remind yourself it’s only 3 months. It’s massive what has happened to us it’s an assault but our bodies are amazing, slowly but surely healing itself, but we find it difficult to just let that happen sometimes because it takes so long.
Just got to keep looking forward. Spring is coming and this will not last forever. Gather those around you who can help you through and hold on
Just got to keep looking forward. Spring is coming and this will not last forever. Gather those around you who can help you through and hold on
