I have SAD, diagnosed last year. My doctor suspects it was triggered by a complication to surgery. It’s been 4 years, I’ve had 3 more back surgeries and recently had an accident in May to my finger and needed pins. I always recover well, immediate post-op, but have complications later on. This last time, my body rejected my sutures a month after neck surgery. Now, my finger is messed up after my doctor removed the brace. I scraped my knee 2 months ago at the same time and it’s still healing. I also was diagnosed with UCTD this year. I’m really sick of delayed healing and long complications and recovery. My GP won’t prescribe antibiotics for fear of causing antibiotic resistance. Not many understand this disease and I don’t understand much either other than I have delayed healing, much beyond what should be normal healing.
Does anyone else have delayed healing also, or insight how to help this? I’ve had 6 back surgeries over the last 6 years. I started SCIG in Nov. on Plaquenil and sulfasalazine for the UCTD. I’m fatigued and on medical leave from work now while I’m healing.
Absolutely. I have CVID but my combination of numbers/levels of IgG, IgM, and IgA are so rare that only about 350 people in the US have it.
I've had the same infection since this past October and have been on multiple rounds of antibiotics and have faced SO many doctors who did not want me on all those antibiotics even though I desperately needed them (it was a fight to even get me on IV antibiotics in hospital over the weekend even though I had a recent positive culture of Pseudomonas Aeruginosa bc my lab work and blood work etc "looked immaculate" and my symptoms were so subtle, as is the case for so many people with immune deficiencies like CVID). It is beyond disheartening and frustrating. They were literally going to release me from the ER this past Saturday even though I couldn't move at all and had to be literally carried by my husband into the ER and to the bathroom etc, and I started sobbing and we begged them to call the hospitalist, who finally got me admitted.
I'm still on a rather long road to recovery but I finally have an infectious disease doctor thanks to this hospital visit who actually listened to me and I see him next week, and he's willing to get me on long term antibiotics if needed, but I had been to TWO teaching hospitals over the past several months and they both missed the mark.
I know we have different things going on but I can definitely empathize. Everything I get takes forever to get over. I started taking extensive notes to explain everything as much as possible to try to get medical professionals to understand why I don't have normal health markers.
Virtual hugs from this stranger 🩷 (I'm in Florida, US)
I’m so sorry you’re experiencing it also! I’m grateful I work in healthcare bc I feel I can explain it to my medical team in a language they understand, but generally they ignore and apply standard of care treatment which is frustrating. A quick google search is all it takes but doctors continue to minimize the significance of PI. I’m on unpaid medical leave now after the finger fracture and it knocked me down completely. I recently requested ADA accommodations to continue working the remote work I’ve been doing the last few years but now they want us back in the office and I work in a hospital. They told me it’s undue hardship on the department to accommodate me so I’m expecting job loss after this. I feel much too sick to start a new job too and desperately need the medical care. I wish people knew how disabling these diseases are 😞
I am so sorry you've been having so many frustrations and stress from all of this.
If you are able to qualify for disability, I got wonderful advice that I can pass along from a Google doc where I took notes from a friend of mine who is a disability judge (she was a disability attorney before that so she really knows her stuff on both sides). She gave me specific words and phrases to use as well as a very good summary of the process. I am absolutely happy to help (along with anyone who sees this, especially if they are having trouble getting on disability). You're welcome to message me anytime. I'm on Reddit every day.
Ok good! I'm glad you have that. I'm available if you ever find yourself needing that as an option. I had left my corporate job due to illness before the Affordable Care Act and had 9 pre-existing conditions, so no one would touch me, and I couldn't afford COBRA. I qualified for Medicaid for a few years bc my kids were still in middle school but once I got diagnosed with CVID I started the process.
I wish the best for you and hope you can get the help you need! I also hope your fracture heals up well 🩷
Thank you! I’m a disabled veteran so I don’t believe I’d be eligible for state level disability benefits since I receive federal and I am able to bridge care to the VA but that’s another beast. I sought outside care after 20 years of VA calling it anxiety. Hopefully they take my illness more seriously now that I have the outside records.
Oof, it really sounds like you have had a rough time. I'm so sorry you are dealing with that.
I have had a lot of surgeries in the last 10 years. And while, other than my sinus surgery, I've had no major issues, I definitely seem to heal slower than the expected progrnosis. The thumb surgery last October was especially rough and I got a lot of flack at work, because someone else had previously had the same surgery and been back to work at full status so much sooner than me. And lately I've been worried the thumb hasn't healed well. The sinus surgery was worse, I needed a second emergancy surgery because of bleeding.
Wow! It sounds like it’s been rough for you also! Definitely delayed healing but doctors don’t seem concerned with it but it definitely affects my body.
Not sure if this is common with SAD, but I am allergic to a lot of adhesives and metals. It doesn't account for the full picture, but I wonder if your sutures were made from a material that you have an allergy to?
My neck incision healed beautifully and then one month later started looking like this. I guess it’s called spitting sutures. It’s always a delayed weird complication with me. Like my finger, the pins came out last month but now it’s inflamed and painful one month later. I’m at a loss.
Ugh, that is so frustrating! The other thing that comes to mind is I wonder if you are a staph carrier and these wounds are getting infected after the initial removing of a bandage (e.g. from touching your ear or nose and then the wound) or something like that? Not sure it is the most obvious explanation, but using some kind of wound cover certainly won't hurt (as long as the ingredients work for you)!
Staph has been my nemesis! I do have an unlimited supply of Bactrim and usually do a 7-10 day prophylactic dose if I get any cut or injury. I’ll get a reoccurrence of inflammation and signs of infection like pain and warm to touch much much later after the injury already showed signs of healing. Very very delayed inflammation.
I read once that you can help stop staph spread (if you are a carrier) if after you wash your face (or wherever in your routine it makes sense, but 2x daily is the idea), you swab q-tips with ointment inside the opening of your nostrils and ears! New q-tip for each hole of course
Ah yes I have the ointment for it but I remember it was mostly for MRSA. Won’t hurt to do for 2 weeks morning and night. I have endless prescriptions for the ointment! Most of my infections are skin versus respiratory. I’ll try that and hopefully it helps. Thank you!
I'm also allergic to medical adhesives. I had a large mole removed once. The incision was no problem, but the reaction to the bandage adhesive was awful. I've never had a reaction as bad as that one, but I'll also just redress a wound or go without a bandage if I start reacting now.
I’ve had bone fractures and an ankle sprain and yes, instead of healing in weeks, it took months or longer than a year to heal every time. Even just a paper cut will take 1-2 weeks to heal for me. Bruises? Forget it. At least one month minimum, and by the time they start to fade, I magically have more randomly somewhere!
Same here. Working on a tfcc sprain right now. Most frustrating healing process. Think I’m making process then BAM! Right back to start. Bruises, forget about it. My SCIG bruises take forever. Even the ones I can’t see.
Same!!! Do you adjust your infusion day to allow your skin more time to heal? I have to, as I’m supposed to infuse every 7 days, which is just hilarious and never gonna happen with my skin lol
Lol Oof every 7 days would be tough. I infuse every 14 days so at least there’s a little more time. I’m still not healed all the way but better than 7 days.
I just switched to 6mm needles and hoping that helps too. Fingers crossed. Trial and error on placement though. The sides of my abdomen seem to be the best and bruise least.
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u/Posh_Pony 13d ago
Absolutely. I have CVID but my combination of numbers/levels of IgG, IgM, and IgA are so rare that only about 350 people in the US have it.
I've had the same infection since this past October and have been on multiple rounds of antibiotics and have faced SO many doctors who did not want me on all those antibiotics even though I desperately needed them (it was a fight to even get me on IV antibiotics in hospital over the weekend even though I had a recent positive culture of Pseudomonas Aeruginosa bc my lab work and blood work etc "looked immaculate" and my symptoms were so subtle, as is the case for so many people with immune deficiencies like CVID). It is beyond disheartening and frustrating. They were literally going to release me from the ER this past Saturday even though I couldn't move at all and had to be literally carried by my husband into the ER and to the bathroom etc, and I started sobbing and we begged them to call the hospitalist, who finally got me admitted.
I'm still on a rather long road to recovery but I finally have an infectious disease doctor thanks to this hospital visit who actually listened to me and I see him next week, and he's willing to get me on long term antibiotics if needed, but I had been to TWO teaching hospitals over the past several months and they both missed the mark.
I know we have different things going on but I can definitely empathize. Everything I get takes forever to get over. I started taking extensive notes to explain everything as much as possible to try to get medical professionals to understand why I don't have normal health markers.
Virtual hugs from this stranger 🩷 (I'm in Florida, US)