Groin Stiffness

[Wayne]

Hi Guys,

Although I'm going great guns in other areas, it seems as if I have significant connective tissue scaring in the groin area. It makes lifting up your legs difficult for things like putting on pants or getting into the car. Sometimes I think my family should just stick me up on the roof rack, at least the view would be good (just kidding). Is this a common stiffness for many with SD? I haven't really read many comments on this symptom. I do suffer from the other usual stiff areas assosiated with SD, but the groin one effects my mobility.

I would love to get some feed back.

Cheers Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[Kim]

Sorry, Wayne, that is a horrible feeling when you feel like your skin won't stretch enough to bend. :crying:  How much Serrakor are you taking?  Early on I took large doses (like 3 x) what's on the label and it worked well to dissolve fibrosis, especially combined with the sauna.

You might also read the previous threads on coconut oil, it's great stuff.  I use it in my diet and also topically.  When I use it topically, I use the same high quality organic oil that I eat.

Do hope they don't have to haul you around on the roof-rack,:roll-laugh:  that would be the ultimate indignation in this nasty disease! :doh:

Take care…..kim

[Wayne]

Hi Kim,

Thanks for your reply. Hope are well 😀

I think I'll forget the roof rack idea as well because it would be freezing up there and that would set off the old raynauds.

My skin is really quite good and getting better all the time (thanks to AP), but I seem to have some internal tendon scaring in my groin – worse on the left than the right and it makes picking up my leg difficult and painful. eg – It becomes fatigued after walking around for a while and then trying to get back into the car is near on impossible and I have to grab hold of the leg and lift it in. Is this a region (inguinal) that is usual to scar up with SD, as I haven't noted any posts or read anything on this issue.

I only take about 3 Serrakor a day and I know this is not enough. I'll ramp that one up a bit, but I find it hard to get windows of opportunity with an empty stomach because I'm always hungry and eating something. Sounds like I'm a bit of a guts really. How many times a day did you take x3 and I guess on an empty stomach?

Cheers Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[lynnie_sydney]

[user=1894]Wayne[/user] wrote:

but I find it hard to get windows of opportunity with an empty stomach because I'm always hungry and eating something. Sounds like I'm a bit of a guts really. How many times a day did you take x3 and I guess on an empty stomach?

Cheers Wayne

Wayne – just a thought because I know you are on Dr D's dietary restrictions. When that happened to me way back, Dr D said that it would be because I was getting hidden gluten from somewhere and my body was craving more. For me it turned out to be from an occasional capuccino (choc sprinkle has both dairy and gluten in it) and from the occasional instant coffee (not Mocconna). As soon as I eliminated all the gluten, the incessant hunger went away. Lynnie  

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Hang in there, Wayne. 😕

I would take the enzymes (Neprinol/Serrakor) in two doses; one first thing in the morning on an empty stomach and the other half at random times throughout the day, on an empty stomach.  Seems some days there aren't enough hours to get it all in, eh? 😉

Are you sure you can blame SD on your groin tightness?  Not being able to lift your leg could be other things too, like a slipped disc in your spine or hernia, etc.

Take care…..kim

[Wayne]

Lynnie – I will have to be a bit more vigilant about not eating any gluten, as it seems to sneak into so many food stuffs that you would never expect. Maybe I won't fang quite so much then. I have booked Dr D for the double app in Nov. It's a while away, but with the cost of getting there and being busy with my daughter's wedding in Oct, probably best to see them in Nov. Let me know if your going to be there as well around then.

Kim – It is hard to fit in all the meds requiring and empty stomach and for me it is Minomycin and Serracor-NK. Shame that those two can't be taken together as that would make it easy. However I will make sure that I take 2×3 of Serracor a day.

The groin stiffness is definitely accountable to SD and began when the whole of my legs were so puffy and the skin so tight, that I could not bend them to a swat. It felt like they would explode because the skin was so tight. There is a tendon in there that must be scared causing the problem – I would think the “Inguinal tendon that connects to the Sartorius muscle”. Seems like I'm a bit individual with that one, but I feel it will get better with time.

No time to be complacent even when you can see marked improvement. Keep on fighting the fight and life is just getting better.:roll-laugh:

All the best – Cheers Wayne

 

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[lynnie_sydney]

[user=1894]Wayne[/user] wrote:

Lynnie – I will have to be a bit more vigilant about not eating any gluten, as it seems to sneak into so many food stuffs that you would never expect. Maybe I won't fang quite so much then. I have booked Dr D for the double app in Nov. It's a while away, but with the cost of getting there and being busy with my daughter's wedding in Oct, probably best to see them in Nov. Let me know if your going to be there as well around then.

I will do Wayne. BTW, I dont go down there any more just for the double appointment. I find it's just too hard to ask the questions I want answered at that double when the focus is on testing and the dialogue is mostly between the two of them. I now book separate appointments, even 8if on the same day. In June this year what I did was to book a long appt with Dr D on the Thurs and then had the double on the Fri and I found that worked well. As you are travelling such a long way. it may be something to consider. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[JeffN]

I understand about the tendon issue. I did not have the skin tightness there but I did have joint pain after I began mino. I attribute that to dieoff in the joints and it did not last too long, a few months but then began to get better. As for the tendons I still have tightness in my legs, knees, and elbows to varing degrees. I find that in the winter when I am in the gym several times a week my knees are better. I hope things become more flexible for you.

I like your 50 going on 150 comment. I assume you are talking about age. I tell people that I went from 55 to 75 in six months, now I feel somewhere closer to my present age… I think.

[Wayne]

Hi Lynnie – I think the separating of the appointments is a great way of doing it and that I should do it like that next time. I would get a better focus from Dr D that way before the double on Fri. Helen and I will travel together this time. The apps should be one on the 11th Oct with Dr D, then the double at 1330hrs on the 12th Fri.

JeffN – G'day. You should see me trying to get out of a been bag, if it wasn't sadly true it would be really funny. I look like a really old man trying to get up, where as only 12 months ago I would have sprung out and lept up like a spring chicken. Like you say the tendon things seem to be around at varian degrees and I need to give my body time to heal the more difficult areas, like tendons. It is great being able to talk to you Jeff to share what is happening to each other. Keep up the good work blasting those micoplasmic mongerals to smithereens.

Might need to hit the sack as I'm a bit tierd,

Cheers Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[Author]

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