Brilliant. Sometimes I learn more from Patient experiences, then I do from professionals who can only give me 5-10 min of their time.
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Apr 6, 2018 · Patients and caregivers are “Experts by Experience” in Just Want to Talk
Brilliant. Sometimes I learn more from Patient experiences, then I do from professionals who can only give me 5-10 min of their time.
Hi @mayoclinicforum ,
Sugar and salt are your enemy.
Sugar is known to be linked to hypotension, causing low blood pressure.
Salt also restricts the arteries big time!
Why does this matter? Blood flow increases healing, it delivers the oxygen and nutrients needed to speed up your wound care healing process.
Hope this helps!
@gtalan prednisone is typically prescribed for cases with “vasculitis”, not livedoid vasculopathy.
I learned this the hard way after being on an extreme dose for 2 years before someone realized the difference.
With LV, treatments helping; blood flood, oxygen and red blood cells are known therapies to look at. Key factors: quality wound care, compression (when needed), low impact exercises, vascular treatments & therapies and proper diet is important to encompass into your program.
Hope this helps!
I’ve been on Xarelto since it was 1st introduced in Canada over 3 years ago. I’ve also been privy to current/past studies showing the effects Xarelto might or might not have on patients. Xarelto was 1st introduced to patients who received knee surgery to prevent DVT’s (Deep Vein Thrombosis) in the legs. Its primary function is for the prevention of DVT’s, but it has been approved for other clotting conditions as well.
For me, it changed my life in a great way since I no longer had to take blood tests to measure my illusive INR that could never get to a therapeutic state.
Now in your case, where your back is concerned. I see you went to an Oncologist for advice? I would recommend seeing a Thrombo expert instead. Are you seeing a Hematologist as well to consult with the Oncologist? You may want to try switching to Eliquis (Apixaban 5mg x2 daily). Both Xarelto and Eliquis are very similar, they are easy to take pills with no need to test your blood on a regular basis and require minimal follow up from professionals.
Each person reacts differently to the same medications. Always remember that the “side effects” detailed online are from thousands of participants in their studies, and only represent a fraction of patients who got those symptoms.
Now I should also note, if you’re taking pain medication to help with the back pain or other, be very careful on what you take. Xarelto was created by Bayer, who of course also makes Aspirin, BUT the combination of the two together can be very lethal and create havoc in your system, causing all sorts of bleeding problems. Stick to Tylenol or the like.
The best test to ensure you aren’t having bleeding problems internally is by checking your stool every single time. I know, yukky, but it’s a precursor to very serious problems. If you notice the stool is extremely dark, almost black or tar like, STOP taking your blood thinner and talk to your doctor ASAP. Internally bleeding is very serious and very few people check for the signs. I made the mistake once by taking Aspirin for my pain years ago and ended up with blood in my stool.
When it comes to procedures, I would talk to your doctor of possibly going on the injectables instead (i.e. Fragmin / Innohep), over the years, I’ve had to switch back and forth from pills to injectables for different reasons. I’ve found they help to alleviate the pain and the struggles of going on and off the medication without complications. Again, these are my own results after years of switching medications due to different reasons.
ALWAYS REMEMBER: Anticoagulants aren’t fool proof. Just like you can get pregnant while using condoms, well you can get blood clots while being on blood thinners. I’ve had many clots while being on blood thinners, it’s a prevention method only. Try to concentrate on other areas that you can control (i.e. Proper diet / Exercise / Less Stress). Creating a full-body health system to help your recovery, healing and survival stage is just as important as being medicated and speaking with doctors.
Keep all your options open. Talk to the right specialists about these medications and try to write down all of your questions. We tend to forget some questions if we don’t write them down. Don’t worry about wasting their time, it’s your life and it’s very important.
I hope this helps a little.
I wish you all the best.
Stay safe and happy holidays!
Please excuse my delayed response. I’ve read through your story twice now just to make sure I understand all that you’ve gone through. I hope you can see from the wonderful people who’ve responded, that you are not alone in this fight. I too have battled doctors, nurses, triage, a mountain of symptoms and unanswered questions for 1/2 a lifetime.
The only thing that ever got me through what seemed like an eternity of false answers, is the love from my family and friends and the hope that one day I have the strength to push through the naysayer’s, unreliable sources, incompetent specialists and non-believers because there has to be someone out there willing to do the things necessary to see it through, and they have.
Never give up, give in, or give away to defeat. No one knows your body better than they do, but they need your help to properly investigate the matter further. Not sure if you keep daily accurate records? If not, I would recommend you start logging your symptoms on a daily basis, including the time you feel pain, swelling, soreness, loss of appetite and how you slept the night before.
If you haven’t already, please try to get an accurate and complete record of your health history. Add them to a binder in different topics according to the type of visitation and the result, or lack thereof.
Now, I can’t respond to each of your health concerns, but here’s what I can respond to…
1) Chronic Ulcers:
As @zenk stated, you definitely want to get a second opinion and biopsy of your wounds. Blood tests are not enough; a full biopsy of the skin is necessary to see what kind of chronic damage is being done. Find a competent dermatologist. I had to go through 3 of the best to find one that suited my case and had the knowledge necessary to make sound, appropriate decisions. Skin care is one of humanities most sought after holly-grail’s.
Now it might be a case like mine. My vascular network, damaged and bruised is the cause of my ulcers. Blood pools, valves don’t work, etc. Having a surgery can definitely affect your U-R system in the same fashion. Whenever we have any sort of traumatic event, the long-term damage is what affects us the most.
if you’re really interested to see what’s going on with your vascular system, I would recommend you go see an Interventional Radiologist. An IR can map out your inner vascular system to seek out problem areas.
Interventional Radiologist are recommended by the Hematology department.
Specialized Massage Therapy: Lymphedema
While you’re at it, you should also speak to a specialized nurse who is trained with helping to treat “Lymphedema”. Your lymph nodes as you mentioned are like mine, chronic and painful. With one or two sessions, you can learn how to massage your lymph nodes properly to “drain” them of the toxic fluids being collected from your body.
2) Blood Tests:
With all the blood tests they’ve performed, have any of them tested for mass infections at all? Have you been prescribed any antibiotics? A great deal of the symptoms you mention seem similar to when I have an infection from my leg wounds, etc. The hot/cold sweats honestly sound like your immune system is fighting something serious. A great deal of alternative foods is available to help the body fight off foreign bodies (ex. garlic, honey, green tea, vitamin C, probiotic yogurt).
3) Livedo Reticularis & Livedoid Vasculitis:
The more I work with professionals in the Thrombosis community, the more I’ve learned that LV & Blood Clotting go hand in hand. Although most of the LV sufferers here within the Connect community haven’t suffered through a blood clot, there seems to be a direct correlation with LV and Thrombosis and potentially a condition which I have called: Factor V Leiden.
Even to this day specialists keep saying they had no idea what LV was and its connection to Thrombosis, and this is coming from the top echelon in the field, so we still have a lot of work to do.
This is why they prescribed Aspirin to you. Aspirin thins out the blood, while also helping with inflammation and pain. In fact, in the past, they prescribed Aspirin to treat Blood Clots. All of which pertain to your case. Haven’t seen whether this is a permanent fix, since you’re still experiencing the same pain, but it can go a long way to preventing further damage. Please be extra careful when taking Aspirin since taking more than recommended is extremely dangerous. As an example, I’m on blood thinners for life. In fact, I’m on Xarelto, the same pharma that designed Aspirin. If I were to take even one Aspirin, I am in great danger of bleeding internally in the next 12-24 hours. So if you need pain relief and cannot get a prescription, I would take Aleve & Tylenol. Probably not recommended*** BUT, when I’m in dyer pain and I don’t have an alternative, those two over-the-counter meds seem to tie me over for a bit. AGAIN, talk to your GP before taking more than necessary, one combination of meds can be ok for some, while others react vastly different.
Now what does this mean for you?
Well here’s where the “health records” come into play. Since Dermatology & Thrombosis teams don’t usually work together, you’ll have to help them both to do their investigative research together, but separate. I’ve done this by bringing a full binder to every meeting I go to. This way I can reference tests, diagnosis, and even symptoms I’ve had in the past. All medicine is just an investigative research. Doctors typically have 10 minutes with each patient and that’s it. It’s up to us to fill in the blanks on our own (horrible I know, but until it changes, it’s up to us).
This is a good step to take. We are now only piecing the two together. There’s a HUGE correlation between Cancer and Thrombosis which if your hematologist doesn’t tell you about, then ask them asap. I understand these two are probably scary, but if you’re anything like me, I would much rather know the “what”, so I can concentrate on the “how”. Not knowing the “what” is probably the single toughest challenge for patients worldwide.
Try to Stay Calm:
I can feel your anger, heck, I fully understand it 100%. Years ago, I used to fight my way through each visit. While working with patients who have extreme cases, I try to always remind them to try and stay calm when seeing a specialist. The last thing you want it to be marked as an “unruly patient”. My file was once marked in a similar fashion, in fact, I would be tossed around from doctor to doctor because they didn’t have the patience to hear me complain about everything. I know it goes against everything in your heart. I find the calmer I am, the more receptive they are to listen to my ideas and to come up with better ideas for the future.
I did a presentation a while back on the “mental aspects of a patient” to professionals in the field, the #1 response I got was: “wow, thank you, I never truly understood how a patient feels about me and how I treat them, I always took it so personally.”
Full Body Scan:
You’re going to hear the words, “I don’t believe in them”, but I wonder if it’s time they perform a full body scan on you. I’m a big fan of tests that doctors dislike. Yes, it can find signs that don’t relate, but it can also find abnormalities in your body that weren’t considered. I found out I have 1 kidney and an abnormal bladder, go figure! What did that mean for me? Well I found out why I have a great deal of problems sleeping on one side and why I’m up all night peeing.
See you never know what’s just around the corner. I understand how you feel, how your whole world seems to be looking outward from this dark cave no one seems to be able to find in the woods. If you can find the strength to light a fire in that cave, you’ll soon see others who find you as well and the more that you connect with, the less lonely you’ll start to feel and the easier it will become to venture out and tackle the daily hardships.
I hope our messages have helped you somewhat. I’m sure some of it is probably not what you needed at all, but I’ve always said, If I can just learn one thing about myself, that one thing is one more idea I never had before and can help me to discover the next big thing.
Like always, please speak to your doctor before trying something new.
I wish you a lot of happiness and love.
Martin. R. Lemieux, Patient Advocate
Hi Jenn, So sorry to hear about your situation. Theres an amazing book that has helped me out a great deal for home remedies to pain called:
“The end of pain”
By: Jacqueline Lagace, PhD and Jean-Yves Dionne
I highly recommend it which goes into detail on how to change your diet naturally.
I would also look into the “Fork over Knife” eating program. I am just starting this program removing meat and dairy to clear out the arterial system in order to battle wounds and clotting factors that contribute.
I hope this helps!
Nice to see you all discussing options for LV. There’s so few of us, it’s really nice to meet you all.
Just a small update, I haven’t been active too much lately, having some issues with a lot of pain and unfortunately, 3 new small ulcers just opened up on my left leg (two of the on top of my foot). Really angry about this new development, so I asked to be switched back to “Innohep” injections (low-molecular weight heparin), since historically my wounds are better when I take the injections…
But the downside is I tend to get massive bruising from injecting once a day on my lower stomach and upper thighs. It’s hard to explain to someone how hard it is to purposely give yourself more pain through daily injections.
Anyone else take Innohep or similar injections with success?
Anyone else get bruising and/or have tips to prevent bruising?
Someone suggested applying ice to the area minutes before injecting.
Martin R. Lemieux
I know and fully understand what you’re going through. Chronic pain is a serious matter and you should be taken seriously. I also know what it’s like to lose hope, years ago I suffered from the same battle, but beat through it one day at a time.
Are you taking any over the counter meds?
I too suffer from Psoriasis and other chronic illnesses. I find Aleve to be the best to relieve the inflammation the pain does to your body. Aleve will also help to relieve the swelling for the lymph nodes. Mine are also hard as a rock and not fun to deal with.
I would also get a Aloe plant, break off a branch and rub it on the affected areas of skin. This will help to sooth the areas of your body that feel like they’re burning.
Have you admitted yourself to the hospital for thoughts of suicide? You’re not alone in this fight. By admitting yourself because you have thoughts of wanting to die due to massive pain, you might have a better chance to see a pain specialist while they help you with the mental battle of chronic pain.
I find meditating helps to ease the mind and control my thoughts. Sleep doesn’t seem to help since pain just wakes me up anyways.
Have you anyone you can speak with? A friend? A family member? Speaking to someone close to you is important to help release these thoughts that you have.
I hope this helps! You’re not alone.