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Thanks Lynne – funilly enough Barbara (my wife) and her mom/MIL were just talking about these the other day having been advertised on the TV!
We did recently buy her a foot massager (one of those Shiatsu ones), which heats and everything, because they are supposedly very good for helping with circulation/neuropathy etc. But she just feels too much pain when using them, so it’s been a bit of a non-starter there too. Will be getting one of these cycles very soon, will report back!
Hi Maz – interesting re. the trampoline…! She was having occasional lymphatic massages, but since the pandemic we have been very strict about people coming over, so perhaps the trampoline might be a good idea, thanks!
I understand your point re. Thyroid. Here are her results:
FT3: 0.351, range is 0.182 – 0.462 pg/mL
FT4: 1.21, range is 0.85 – 1.8 ng/dL
TSH: 0.49, range is 0.4 – 8 uU/mLFrom what I can tell, the FT3 and FT4 are kind of around the centre of these range values. The TSH however is right on the cusp of the lower value. I guess there are many things that could affect this value…
A quick google search tells me that low TSH whilst on Levothyroxine suggests over-medication. This is a conclusion we previously came to, so we reduced her thyroid med from 75 to 50 mcg. However when we did this, the levels all flipped the opposite way! ie, TSH was over the ‘range’, and FT4 was under. We reverted back to her original dose of 75mcg, and things have now settled in the ‘ranges’, but as you see the TSH is still at the lower end.
FYI, the thyroid values were almost identical this month to last month, so it seems reasonably stable at these values for now. In fact, the TSH has gone up from 0.41 previously to 0.49 this time, so a slight improvement if anything.
We really feel it’s just the lack of movement. Without wishing to make things too basic and be pointing out the obvious, every part of your body needs blood to carry oxygen, nutrients, etc. You heart is a muscle, and just like any muscle in your body, if it’s not required to work hard, it’ll get weaker. We honestly feel that she just isn’t getting enough blood pumped around to the extremities, including her head, because her heart is just not pumping like it once did, and she isnt pushing it right now to work harder to get the blood moving. This is why she always has cold feet, even when wearing many thick socks and heaters blowing directly on them (obviously Raynaud’s has a part to play in this, but she wasn’t like she is now just over a year ago). She still has pain in her feet, and in one hand, and she is light-headed. It’s obviously more complex then just that alone… the light headedness began a few months after the stroke, not immediately after, and she never experienced it before, despite already being on thyroid meds, and slightly anaemic. However, immediately after the stroke, she was bed-ridden with very little movement for a good three months at least. And until this day, she hasn’t really increased/regained her activity that much… her activity right now is not even 10% of what it was before the stroke… she would walk everywhere, get buses by herself, cook, clean, the lot!
We think getting her heart and lung function are the next logical steps. Problem is that we can only do that in the hospital, which we are avoiding like the plague right now. The blood gets drawn at home, so thats a bit easier… trying to find a clinic that might be able to see her at the beginning of the day with nobody around, does it sound like a smart idea to get these checked?
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaIf MIL has that much pain maybe you could give her an asperin 30 minutes before exercise.It might dull the pain enough to get her moving.
Hi Steve,
When does she experience light headeadedness most often? Is it when she watches TV? When she sits in the same position, under the same angle to the screen her neck/head veins arę strained. Blood circulation can be affected. Try to change her position towards the screen some times during the day. Also have you checked her ears towards wax blockage?RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousThanks Lynne – we will try this. Given that she is having Clopidogrel once every two days, and then the systemic enzymes the two days in between, is it OK for her to take aspirin too? I know they all have blood thinning effects, thats all!
Hi Linda – thanks for getting back to us again after such a long time! So the light headedness is typically not so bad when she is lying down watching TV. It is noticeably more when she is sat, than when lying. When she is stood up, she feels it a lot. Of course this can happen to all of us at the moment we get up, but usually passes after some time… for her, it doesn’t pass at all. It also varies from day to day the general severity of the sensation. It doesn’t seem to coincide with any particular medicine (we’ve also tried eliminating various medicines one at a time to isolate which may cause it, but none made a difference!)
Although it is interesting what you say about the veins/neck being strained. She generally doesn’t have the best posture when she is sat, so it may well be a contributing factor. Just before the pandemic hit, perhaps 4 months after her stroke when all the light headedness began, we did take her to get her ears cleared (they were pretty blocked up with wax), but getting them cleared didn’t make a difference unfortunately.
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaSeems that Lyme vertigo is a “thing.” You’ll find lots of articles online about this, Steve. Long-standing Lyme, in particular, may result in cranial neuritis according to this site.
Lyme disease dizziness
While you won’t see vertigo on most symptom lists for Lyme, it is something that can occur during the later stages. Having the disease for an extended period of time can lead to cranial neuritis. If the condition affects the eighth cranial nerve (vestibulocochlear), then vertigo and other balance issues may result.Chiropractors can sometimes help with dizziness and vertigo – do you know of any nearby you might ask? This one on YouTube offers specific exercises to help dizziness and vertigo.
Hi Maz,
Sorry for the delay – thanks so much for the link/info. The day you posted this, we started the exercises straight away! Strength in her neck muscles may well be an issue, given how much time she has been in bed etc. Worth a try for sure!
Interestingly, we went to a chiropractor yesterday for Barbara due to her migraines and other pains she has round her neck. Turns out she has some issues there which we are getting into resolving right away. However, the same issue that she has (neck subluxation) can cause a wide array of symptoms, as I’m sure you know, including light-headedness/dizziness, instability, weakness in legs/arms… ie, many symptoms that Martha has!
Given she has spent much of her life in bed watching TV (even when she was mobile, she would like to watch TV in bed in the afternoons lying down, rather than seated), over time this may have led to a similar problem in her neck, like what we now know Barbara also has (and supposedly is pretty common too). The extended period of bed-rest after the stroke may have just made the condition worse/exasperated the situation…?
We will be taking her next week to get some X-Rays and an examination by the Chiro, to see what’s going on… will update you all when we know more!
I do have a question, in fact two. Firstly, do you guys feel that a chiropractor would be suitable for Martha, given her Scleroderma? We don’t want to enter into a therapy that may make her worse, even if it turns out she has a neck subluxation. Just wondering whether Scleroderma patients in general utilise the services of chiropractors, or if its a bit too rough/forceful an approach given their condition?
My second question is: can patients with Scleroderma have operations? It’s something we’ve always wondered, as one of Martha’s doctors over here a long time ago said that she couldn’t, because of her scleroderma (not because of any other condition, they referenced specifically the Scleroderma). However I’m sure we’ve read of many of you fellow Sclerodermer-ers having had ops without any unusual complications…? Not that she needs any kind of operation now, but we think it may be another case of mis-information/bad advice from the Drs here.
Slightly off-topic, but we’ve always wondered.
Thanks again Maz/everyone else!
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaHi Steve,
Do hope the chiropractor can offer help to MIL!!! I have recently started back to the chiro and had the same concerns as you. The x-rays, however, provided enough info to determine that adjustments would be fine in my case. A lot has to do with spacing between vertebrae in the neck. Your chiro should be qualified to figure out if adjustments would be suitable and safe for her. With newer research emerging about the effects of vagus nerve stimulation and RA, I discussed this with the chiropractor. He researched it all and felt that some of the techniques they use may have beneficial systemic effects.
Regarding surgical interventions and SD, this topic has arisen here before and you can probably find those old conversations using the search function. Generally speaking, from what I can recall, it seems most SDers prefer to avoid it (unless absolutely necessary or life-saving) due to how surgery may produce stress, which inherently can lead to rheumatic disease flaring, but also with SD, there is the concern of scar tissue overgrowth. It’s a pretty individual thing, though, and as with any surgery risk-benefit has to be discussed with one’s doctors. I recall a discussion here about the procedure to stretch the esophagus to ease swallowing issues in SD patients….some people needed it to ease symptoms, but others chose not to proceed due to the potential for esophageal scarring.
Hi all!
Maz – thank you so much for the link above, and also the link you sent me in private re. the Rife frequencies. We tried the Rife thing a few times, with no real difference. However, since you sent the link above re. cervicogenic dizziness, we have been doing all of the exercises religiously since you posted, and… the dizziness is improved! It isn’t gone by any stretch, but its improved.. some days worse, some days better, but some days its not even mentioned(!) So, thank you so much on behalf of all of us – we’re by no means at a perfect situation yet, but just to see some improvement is a huge deal!
What we’re kind of thinking now is the following…
Although we haven’t yet been to a chiropractor, they seem pretty certain that based on what we have described to them, that they could help Martha with a number of issues she has (basically the dizziness and the pain in the feet that she has). This ultimately relates to poor posture, as a result of much time in bed.
Too much time in bed also links in with bad circulation… we went to an anaesthesiologist the other day for neural therapy (will start a new thread about this as it was very promising also), and he commented that the circulation in her feet was very poor (which we were fairly sure of already, but he confirmed it with his experience etc). He also commented that she basically has no muscles, and what she does have is very stiff and tight (all of her Dr’s have said this). Obviously scleroderma sufferers suffer from bad circulation as it is, so we think the year and a half bed bound has just compounded this massively. With this in mind, its not too hard to imagine that the circulation up to her brain is also affected, further compounding the dizziness.
So, poor circulation/bad posture are the two main issues. Makes sense, as this all began after a few months of being in bed. Given that she is only very recently starting to pick up her activity levels, we’re only just beginning to see slight improvements now. We’re getting her blood checked tomorrow, but upon last check a few months ago, everything related to anemia was looking good, so we dont feel that this is the issue any more.
In summary, thank you! We feel like we’re on to something now re. the dizziness, just a lonnnng road ahead. Getting her to be active is a huge struggle (as previously explained), so we just have to keep pushing away.
Thank you as always for your help and suggestions. I am about to start a new thread regarding neural therapy, as we are taking here to that for her foot pain – more on that in the other thread.
Cheers!!
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona
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