Archive for the ‘Treatment’ Category

Tracking the Possible Side Effects of Your Prescriptions

November 26, 2021

I am pretty sure, most of us when we get a new medication do go through the drug information as well as discussion with our doctor about the side effects of the med. But keep this information because side effects can happen at any time..

There are at least three situations I can think of where it could be very important. I know two from personal experience:

  1. You can adapt to the medication over time and the side effects can creep in as you’re adapting. For me, it happened twice. I was on Celexa for several months before the side effect of abdominal pain started creeping in.. Because it had been a few months we, nor my doctor or I, didn’t associate a possible side effect from a medication to the pain. I was also on fentanyl and didn’t even notice the side effect of a decreased libido as it slowly crept in. I thought it was part of getting older. until I came off the medication & return to the level of high school..
  2. Dosage changes can also impact. With the increase in medication to help treat something you can also increase the risk of side effects. I had this happen with Cymbalta. Well it didn’t help me with my pain it was helping me with my mental health but we had to shift it up one level. This shift did the same thing as my fentanyl just took alot faster. Zero libido kicked in after only 2 days.
  3. Other Interactions. It is entirely possible for medications to interact with other substances. Yes, the big one would be other prescription medications, there’s a possibility of interacting with over the counter medications, supplements of all sorts or foods even. So if you are having side effects, if you made any changes in any of these, take that into consideration. But the side effect might be from the food or the supplement or the new med, but the side effect could also be from the initial medication or worse a combination of more than two.

So, Yeah. Keep as eye on your side effects if there are changes, even if you’ve been on it for a while. Unfortunately, the third situation is the most convoluted one to sort out.

Flaring! Flaring bad!

November 23, 2021

Yesterday was the perfect storm. Everything conspired against me.

  1. Poor Sleep. According to my fitbit, for the last several weeks, I’ve been getting usually between 4 & 6 hours of sleep a night, average rating poor-fair. There’s the occasional longer, better sleep in there, but not often..
  2. Forgotten Medication. When I left for the cottage early this morning, I forgot all my meds at home. Admittedly I didn’t need them all today, but there are certain ones that I do have to take at certain times for them to be effective. Unfortunately, those got left at home. I did have limited or weaker alternatives which I suppose is better than nothing.
  3. Emotional Stress. I am currently having problems with my current relationship. I’m not sure if it’s something I can handle and accept or not, so there’s alot going on there..
  4. Poor Diet. Due to the aforementioned stress, I haven’t been eating.. I haven’t been eating well & I haven’t been eating much. Neither is good, both is worse.
  5. Activity. Spent the day in bed.. with my boyfriend, not sleeping. While this is usually a good thing, due to stress, I was unable to truely relax and enjoy it. So I was getting the workout without all the longer term benefits
  6. Physical Stress. After I’d started going down hill, I had a horrible drive home. What would normally be a nice relaxing 1½ hour drive home from the cottage turned into a 3+hour nightmare. Between accidents causing an entire highway to shut down for over 14hrs, excessive detours, multiple accidents on said detours, snow.. The body begins to tense up more & more & more.. and with me being in the car I wasn’t able to like stretch or anything creating more physical stress

For the first time in over 3 years, my pain turned to a solid 8/10.

After 2+ hours, 4 Tylenol3, 4 muscle relaxers, an anti-inflammatory, my CBD oil, prescription edibles, and a backrub with A535.. the edge started to come off, but I also started feeling the effects of over medication too..

I just can’t win..

What We Should Know About Our Meds

November 16, 2021

Given our chronic medical issues you would think we would know everything and anything about what is going on. Well some of us are fanatical and no every single thing but her medical conditions are treatments and all the other possibilities, very few of us do. But here are some important information that we should know.

Who’s Your Pharmacy Staff?

I’m not talking about the stock boys or the cashier’s, but the staff who prepare your meds. If you have a good rapport with the pharmacy technicians and your pharmacist you are less likely to have problems and they are probably more willing to take the time to communicate with you about concerns and questions you have.

Do I know my Pharmacy Staff?

I get my medications through a large national chain. I would recognize the two pharmacists that work nights I believe one is Christopher & I *know* the other is Stephanie. As for the Pharmacy techs, I do recognize them & I believe most of them recognize me in the context of the pharmacy. The girl who usually works pick up is Hailey and she recognizes me, despite the mask. When she sees me step towards her in line to get my meds she says to me “Hey Kelli! How’s it going?” As she’s already getting my info pulled up on the computer which is search my last name. The girl before her I also had a similar camaraderie.

The pharmacy prior was a smaller store of a different national chain. They knew me fairly well and vs versa. We would recognize each other on sight, even outside the pharmacy, by name – Mine, my SO & my Dog lol.

What Are Your Medications?

Most of us know our medications known by one name or another and most of us also know our dosages. But did you know that the generic is not the same as your brand names. Each of these medications have different code numbers so Nabilone has one unique number and Cesemet, which is really the same medication, has a different one. This is because the formulation is slightly different Do you know about these numbers? I know in Canada it’s called the Drug Identification Number and I believe in the States it’s a National Drug Code (someone correct me if I’m wrong). They *should* be listed on your prescription bottle

Different formulas & dosages of the same medication all need a unique DIN or NDV

Do I know the Drug Identification Numbers of my medications?

No, not off the top of my head. I do have that information in my bedside table however (maybe I should put that in my phone – lol). So while I don’t have the information in my head I do have a handy.

This is the reason why CBD or THC by prescription is not covered by medical benefits because it does not have a DIN or NDC

What are the Possible Side Effects of Your Prescription?

I am pretty sure, most of us when we get a new medication do go through the drug information as well as discussion with our doctor about the side effects of the med. But keep this information because side effects can happen at any time..

Check back Next Week for More on the Side Effects

Recent ER Visits

October 22, 2021

A few weeks back, I was talking to my mom about my health and we were discussing one of my previous trips to the emergency room. The visit in question was due to mental health not physical but it’s still triggered a thought in my head.

I used to be a fairly regular patient when I lived in East Toronto.. At my worst I was in the ER at either Centenary or Scarborough General 2-3 times a month for quite a while.

With this conversation, I came to the realization that I haven’t been to the ER or the hospital since covid started, and the world shut down March 2020.

This means that I had not had to go to the ER for my pain at all for almost a year & a half! Personally, I think that’s pretty good!


Before anyone tells me that a trip to the ER is pointless & they will just accuse me of wanting drugs and won’t take me seriously. I believe I’ve actually addressed this issue previously.

When I go to the ER, I’m not looking for narcotics. What I want is big shot of toradol and some sort of stronger muscle relaxant. What this does is it calms down my osteoarthritis which makes the rest of the issues significantly more manageable.

There is even one doctor there at Oshawa General who also used to be at Centenary where I used to go when I lived in Toronto. Because of being a frequent flyer when I was in Toronto, this physician knows me on sight, knows my likely issue, and will turn around and say “Toradol shot?” And he writes the order for me. I can be gone in minutes once I’m in the back when he’s there.

Myth Debunked VI of VI

June 6, 2021

FIBROMYALGIA DIAGNOSIS IS THE END OF THE ROAD

Many find it hard to accept a fibromyalgia diagnosis, not just because of the condition itself but because of what it means. It can feel like the healthcare professionals are saying ‘there’s clearly something wrong with you but we have no idea what it is… there’s nothing more we can do for you’.  This ties into the point of the trashcan / umbrella diagnosis.

Lack of information and fibromyalgia-specific support at the time of diagnosis can leave many feeling like the diagnosis is the end of the road, but that doesn’t have to be the case. The OP was personally told by her rheumatologist not to go online because she’d ‘fall down the rabbit hole’. I imagine the doctor wanted her to go home, give up and stop bothering doctors.

Acceptance, often a difficult and ongoing work-in-progress for many, can be done in conjunction with keeping open mind, still being open to new developments, diagnoses and tests and treatments while working to manage fibromyalgia in day to day life.

Myself, I knew my diagnosis before my doctor’s did (Did the same with my endo), so acceptance was never much of an issue for me. I think my GP had a harder time accepting it than I did.

While there’s no cure, a multi-disciplinary approach can help to some degree. The likes of pacing, pain self-management therapy, massage, acupuncture, gentle exercise, gadgets, self-help books, medication, supplements and so on will work differently for everyone; both the experience of fibromyalgia and its management will be different for each person. It’s often a case of trial and error for each individual to develop a routine and to find the tools that work more effectively for them. 

My regime is a multi-disciplinary approach as mentioned above. I have a muscle relaxer, an anti-inflammatory, low level narcotics, MMJ and a small selection of vitamins. I also regularly see a physiotherapist /osteopath, RMT, pain physician for trigger point injections, & my dentist because of my TMJ, I participate in exercise which prior to covid was Aquafit for the most part. I try to watch my dietary choices, but I know I still fail there- addictions to sugar & McDonald’s. I am also involved in chronic pain support groups in my area which are currently virtual.

What hasn’t worked for me includes Lyrica, Gabapentin, Cymbalta, Fentanyl and Codeine Contin. I have given acupuncture several tries but have not found it helpful for me & occasionally detrimental. My best friend sees a chiropractor but I found that they were less helpful for me. I also still need to be very careful in the way of exercise so it’s not to over do..

30 Facts!!

May 24, 2021

Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.

  1. Every morning is a tough morning.
  2. I can sleep all day and still feel like I just ran a marathon.
  3. If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
  4. When i’m tired, let me sleep.
  5. Certain foods make me flare up, For me that’s items like Ice cream breaded food products (like fish sticks or chicken fingers), mayo & salad dressing, KD, etc.. Some I know why, others no clue.
  6. When I’m in a flare, leave me alone in a dark room but please check in, even if I don’t answer. It makes me feel cared for & loved .If I am flaring and I am responding, I’m likely asking for a ride to the ER.
  7. Yes, diet matters, but in flare mode, all bets are off.
  8. Yes, my face is swollen. No, I didn’t gain 5 pounds overnight… Well I could have gained, but not on my face.. So, Yes, that is a tell that I am in a flare.
  9. I have many different sizes of clothes in my closet to accommodate flare vs. non-flare days. I currently have clothing from a medium ( very generous medium) to 3x.. I’ve lost weight, so likely only a few items & eventually they will go too.
  10. Fibro Fog sucks. Ya know when you get absent-minded every once in a while? Misplaced your keys? Misread something? Forgot to water the plants? That’s Brain or Fibro Fog. While it happens to everyone at some point, it not the norm. For people with Fibromyalgia this is the norm. Every day. I have even lost my train of thought, mid-sentance. It happens enough that those close to me don’t bat an eyelash when it happens. Some even see it happening & will remind me of what I was saying. The worst, is fogging out when I drive & I love to drive, but have to be super careful to make sure I am clear minded.
  11. Ask before you touch. Some days, I can barely tolerate the feel of clothing or even my hair on my skin. When I’m ok, give gentle hugs please — my skin & muscles may still be tender. But if I give you a bear hug, you can give me one back!
  12. Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
  13. Allergies play havoc on my body. Scented products like perfumes & body products are typical culprits Sometimes I don’t even know I’m allergic until I experience it, So it’s a bit of Russian Roulette when I go into public because I can’t control what scents other people wear. Food allergies/sensitivities do not make life any easier either, especially when eating out.
  14. I am a human barometer ( there’s a post around about that.. I can typically tell it’s gonna be too cold, too wet, too hot.
  15. Yes, i am on medications, sometimes even alot of them. I have a decent relationship with the pharmacy staff, and I know exactly what all my medications are, the dosage, and why I’m on it & how it helps.
  16. To me, car rides are joy rides cuz I really love to drive. I need to stop every hour or two to keep my legs from going numb or seizing up. It, for me, is so worth it! But so many with fibro feel differently than I do & equate it to a highly painful roller coaster ride.
  17. Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
  18. I can get moody. You would be too if you were in pain all the time, be patient with me.
  19. Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
  20. My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
  21. If I cancel my plans with you, don’t be mad.. Remember, I made plans with you, because you are important to me. I am trying and obviously want to hang out with you, so please keep any nasty commentator yourself as I already feel guilty.
  22. Your friend with Fibro that says they have no pain doesn’t make me feel any better. Plus if they have no pain, they may not have fibro cuz *all* Fibromites have *some* level of pain at *all* times Alternatively they could simply lying either about having fibro or about being totally pain-free. Also, just cuz someone says they are “Good” that’s does not mean pain-free
  23. “You should exercise.” ROTFLMAO. Have you considered going to the gym while you are in the middle of the flu with body-wide aches & pain, fatigue? Didn’t think so, so how can you expect me to when I have body-wide aches & pain and fatigue? Yes, I do exercise, but I’m not a hypocrite. Do you know how long it took from me to go from bobbing in the water during aquafit to get to my current level of exercise? Years!! It helps, that I have lost weight. Before you use me as an example of of someone with fibro who is ‘fit’, remember that I started my journey to become healthier & to increase my fitness level in the winter of 2012, almost 9 years ago. And I would not consider myself ‘fit’
  24. Going to the doctor makes me sad & sometimes overwhelmed— it’s a reminder of my condition. And it doesn’t help that I have at minimum a half dozen medical appointments each month – GP, Pain Doc, RMT, Physio/Osteo therapy, Gyn, Neuro, Dental, Psych, mental health support groups, and one offs for tests like bloodwork, ultrasound, x-ray, MRI or CT.
  25. There are zero no-pain days, but my low-pain days are my happy days. So if I’m looking good and acting good and I’m social, I’m better, right? No, just a good *low* pain day. Fibromyalgia is chronic & will not go away
  26. Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful. Unfortunately, some of that downtime does not even permit blog writing because the pain or fatigue is*too* intense, so I have missed posts.
  27. Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
  28. if i am being a dick about my health, you will not change my mind. I have to figure it out myself. For those in my life who put up with that for years, I am sorry.
  29. Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
  30. Yes, I have depression. No, it’s not because of my fibro. My depression started at age 16, but fibro, we believe, started from Mono when I was 19-20. So, obvs they started at different times plus I do know the triggering event that started my depression.

Original published by Puja Rios on May 11, 2007 at https://www.huffpost.com/entry/25-facts-for-fibromyalgia-awareness-day_b_59148663e4b01ad573dac1c2

A Letter from Fibromyalgia

May 6, 2021
A Letter from Fibromyalgia

Hii!! My Name is Fibromyalgia, and I’m an Invisible Chronic Illness.

I am now velcroed to you for life.

Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyhow I please.

I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun?

I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Oh, yeah, I can make you feel anxious or depressed, too.

If you have something planned, or are looking forward to a great day, I can take that away, too.

You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!

I hear you’re going to see a doctor who can get rid of me. I’m rolling on the floor, laughing. Just try. 

You will have to go to many, many doctors until you find one who can help you effectively.

Pain pills, sleeping pills, energy pills, anti-anxiety pills

You will be put on pain pills, sleeping pills, energy pills, anti-anxiety pills, antidepressants, anti-epileptic or anti-convulsant pills. You will be told you are suffering from anxiety or depression, given a TENs unit, get massaged. You will be told that if you just sleep and exercise properly I will go away, told to think positively. You will be poked and prodded. MOST OF ALL, you will not taken as seriously as you feel when you cry to the doctor how debilitating it is to live your life, every single day.

Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease.

Some of they will say things like “Oh, you are just having a bad day” or”Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.

My Endometriosis Chronological Journey of Symptoms & Treatments

March 22, 2021

Over the years I have been on many medications & have tried various options for treatment. This is a list of treatments, both before & after diagnosis:

Summer 1988 – Menstruation cycle becoming more uncomfortable and occasionally painful. Treatment? Nothing.. I just figured they were just bad cramps.

Abdominal pain considered just ‘bad cramps’

March 1990 – prescribed Ortho 7-7-7 by my GP at my request for the purpose of lightening & regulating my cycles. This medications did helpat the time.

Winter 1994 – Increase of re-occurring and irregular abdominal pain, beginning in spurts. Pain usually, but not always, eased by soft bowel movement. Minimal impact on quality of life

August 1996 – Increase of re-occurring and irregular abdominal pain, still in spurts. Pain less frequently eased by soft bowel movement. Pain/discomfort had some impact on general quality of life.

Autumn 1997 – By this time, due to frequency in bouts of pain, was able to begin distinguishing between different types of pain as well as circumstance surrounding the pain. The abdominal pain and discomfort was beginning to have noticeable impact on general quality of life.

Spring 1998 – Referred to gynecologist who only adjusted my oral contraceptive to Triphaisal. This was changed back in the Autumn due to side effects ( no, I don’t remember or have record of what they were)

November 1998 – Referred to gastroenterologist by recommendation of gynecologist. Within a month I had a colonoscopy and a diagnosis of irritable bowel syndrome. Prescribed Dicetel which alleviated some symptoms. Referred back to gynecologist in March 1999.

Laparoscopic surgery

The next three months were spent pushing my gynaecologist to perform an exploratory laparotomy to confirm, or deny the presence of Endometriosis within the abdominal area.

June 1999 – Diagnostic Laparoscopy resulted in diagnosis and initial surgical treatment, excisement of Endometriosis. She was unable to excise all of the endometrial tissue as she did not have sufficiently long tools to get to all the areas.

August 1999 -January 2020– Quick return of abdominal pain. Prescribed Lupron hormonal treatment who was an ineffective treatment.

Depo Lupron

January 2020 – Full Laparotomy resulted in excision of remaining & new Endometriosis growth and a left ovarian cystectomy. Back on an oral contraceptive, Ortho 7-7-7.

March 2000 – Due to scar adhesion, approximately 12s layer of muscle fat & fascia scarred together. It took one very long and very very painful hour for my osteopath to loosen the abdominal scaring from my surgery. But OMG, the relief when she was done was phenomenal.

July 2000 – began to experience abdominal pain during and immediately before menstrual cycle., A more typical reaction of Endometriosis

Summer/Fall 2000 – Attempted to try accupuncture & Chinese herbal medicine for Endometriosis. The needles, I have found, don’t help me & usually also give me a migraine.. The herbal had zero impact.

November 2000 – began vitamin therapy to help combat Endometriosis & to improve overall health. It helped as a month later the abdominal pain during and immediately before menstrual cycle decreased.

October 2001 – Ceased oral contraceptive to participate in Endometriosis study .

January- July 2002 Participatef in study for Depot Provera. Received monthly shots of Depot Medroxyprogesterone Acetate Subcutaneous Injections. No change in symptoms while on the medication. Returned to Orthon 7-7-7 upon completion of study.

Depo- Provera

August-December 2003 – Increase again is abdominal pain level throughout monthly cycle, missing increasing amounts of work. The ended December 25 when I went on medical leave.

February, 2004 – Laparoscopic surgery, cautery of Endometriosis & lysis of pelvis adhesions. Bowel declared ‘immobile’ likely due to IBS.

March 3, 2004 – Start Othro Evra Contraceptive Patch continuous.

April 4, 2004 – Start Othro Novum 1/35 oral contraceptive continuous as patch resulted in breakthrough bleeding..

June 20, 2004 – Start Minovral oral contraceptive continuous as Ortho Novum resulted in breakthrough bleeding

January 2005 – Change Minovral to 3 month cycle due to break through bleed

March 2005 – 3 weeks of severe abdominal pain – Thought to be endo related, as corresponded with menstrual bleed. Took Percocet.

Severe Abdominal Pain

June 2005 – Severe abdominal pain again – Thought to be endo related, as corresponded with menstrual bleed. Took Percocet. Started Yasmin oral contraceptive continuous as Minovral had negative side effects. Was told if breakthrough bleeding occured, let cycle come. Unfortunately, I had three visits to ER for abdominal pain, CT scan showed enlarged gallbladder & possibly an ovarian cyst again on right side.

August 2005 – Abdominal, gynaecological ultrasound. Negative result.

October 2005 – Abdominal, gynaecological ultrasound. Negative result.

I don’t recall what I was switch to next, but it was a continuous oral bcp. Have been on a few other continuous birth control pills since then. Been fairly well.controled since then with occasional spots of pain. Changes were due to side effects and allergies.

Mirena IUD

Currently, I am still pre-peri-menopausal & have an IUD. I was also placed on Arthroyec, an anti-inflammatory, in the late 1990’s prior to any surgery but am still on.. The only problem I currently have is the natural bleed I get due to placement of tiny veins/arteries just inside the vagina. My current gynaecologist cauterizes them once or twice a year.

The COVID Vaccine & CFS/ME, A Professional Recommendation

February 25, 2021

I received this email recently from Dan, a member of my local ME&CFS community.. The topic, as I’m sure you’ve guessed, is in regards to vaccinations and ME&CFS… Dr. Nancy Klimas’ gives her opinion on this very topic – her message is highlighted in blue.

Warning: lots of technical jargon. If you can understand it all, please translate when this means to us lesser mortals… 😉 I do think the Doc is basically saying unless to react to vaccines you should get the vaccine but the alternative could be, potentially, a long, slow, painful death, alone, without friends or family.

To Members of the ME/CFS Community –
Our recent fundraising for Dr. Nancy Klimas’ ME/CFS medical research at the Institute for Neuro-Immune Medicine (INIM) at Nova Southeastern University raised over $4,200 in a couple of weeks.
As our fundraising efforts were underway, Nancy was formulating her thoughts on how those of us with ME/CFS might consider getting the vaccine.
She recently sent me the following:


Hi Dan – I put together my opinion and hopefully its posted on our web page (https://www.nova.edu/nim/index.html) today. Nancy
To vaccinate or not – with ME/CFS
I have been asked this question dozens of times over the past week. This is my opinion –
COVID kills people. It kills people with over activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk of an ME relapse with these hyper reactive vaccines (the first wave to be released) , you have to weigh the possibility of an ME relapse against the risk of death from COVID.
You can mitigate the risk in a number of ways – just the way you do when you feel a relapse coming on. Before the vaccine make sure you are taking enough antioxidants, particularly NAC or glutathione and coQ10. The big mediator of post vaccination relapse and immediate reactions is mast cell activation. If it happens immediately, that is anaphylaxis, but if it happens slowly and low grade over days the mediators mast cells release can drive a classic ME/CFS relapse. So, take an antihistamine before and for several days after the vaccine – the strongest one you tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice). There are many mast cell stabilizers, watch Dr. Maitlands excellent lecture on our web page from the recent conference we sponsored on the subject if you want to know more: Managing the Syndrome Soup: POTS, EDS, MCAS & ME/CFS https://www.nova.edu/nim/events.html
There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas. If you have been diagnosed with mast cell activation syndrome it would make sense that your risk of an immediate reaction to any vaccine should be higher, though the data on the risk to people with mast cell activation syndrome or prior vaccine allergic reactions is not yet known with the COVID vaccines. I suspect we will know fairly quickly , with millions of doses already administered. So you may want to wait (taking all of the COVID precautions very seriously) and when you do take the vaccine plan to stay in the medical setting for at least 30 minutes, consider several hours, to be in a safe place if you do have a reaction. In this special circumstance premedication with a steroid, the same way we premedicate people who need a CT scan with iodine contrast dye, could be provided by your physician.
Please note that if you take the vaccine you should take the whole dose, and the current vaccines, Pfizer and Moderna, should be administered twice. It is not yet known how long the immunity will last, but there are blood tests that look at antibody levels available. They came to market very quickly, we will know more about the quality of the antibody tests over the next few months. Most importantly, vaccination is not 100% (in fact the two initial vaccines trials were 95% effective in preventing or reducing the severity of infection) So vaccination does not exclude strict distancing guidelines, and the masks continue until “herd immunity” levels of vaccination have been reached (70% of the population)!
Of course, these recommendations are simply my opinion, and we will know a lot more about safety in the coming months – but 30,000 plus folks took the vaccines in the trials (that’s a lot) and you have to be moved by the photos of health care professionals lining up to receive their vaccine. Is there a risk? Yes. Certainly more a risk of ME/CFS relapse than anaphylaxis, which should be manageable. Is it worth it? Your decision, weighing all that you can find out. But more than 330,000 Americans have died and the new strain of the virus is likely to make our current rate of infection go much higher. Please take this seriously.
More than you wanted to know:
Partial vs. absolute protection
Most vaccines offer incomplete protection against infection and this is likely to be the case with SARS-CoV-2 vaccines as well. However, even partial protection will be of benefit both to patients and the general public. Partial protection may mean that most but not all persons develop immunity, or that some recipients develop weak immunity that makes the consequences of infection less severe than they would have been otherwise.
(December 2020 update: Information from the American College of Rheumatology Regarding Vaccination Against SARS-CoV-2).
Here are the official recommendations:
The American College of Allergy, Asthma, and Immunology (ACAAI) has issued guidance for physicians and other providers related to the risk of an allergic reaction following vaccination with an mRNA-based coronavirus disease 2019 (COVID-19) vaccine.
ACAAI’s recommendations are in line with guidance issued by the Centers for Disease Control and Prevention. Specifically, that patients experiencing a severe allergic reaction after getting the first shot should not receive the second shot.
In addition, the ACAAI COVID-19 Vaccine Task Force recommends the following guidance for physicians and other providers:
The mRNA COVID-19 vaccines should be administered in a healthcare setting where anaphylaxis can be treated. All individuals must be observed for at least 15 to 30 minutes after injection to monitor for any adverse reaction. All anaphylactic reactions should be managed immediately with epinephrine as first-line treatment.
The mRNA COVID-19 vaccines should not be administered to individuals with a known history of a severe allergic reaction to any component of the vaccine. Although the specific vaccine component causing the anaphylaxis has not been identified, polyethylene glycol is one of its ingredients and has been known to cause anaphylaxis.
Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving. A decision to receive either of the mRNA COVID-19 vaccines that are currently approved for Emergency Use Authorisation by the US Food and Drug Administration should be undertaken by the individual, along with their physician or other provider administering the vaccine using their professional judgment balancing the benefits and risks associated with taking the vaccine.
People with common allergies to medications, foods, inhalants, insects and latex are no more likely than the general public to have an allergic reaction to the mRNA COVID-19 vaccines. Those patients should be informed of the benefits of the vaccine versus its risks.
The mRNA COVID-19 vaccines are not live vaccines and can be administered to immunocompromised patients. Physicians and other providers should inform such immunocompromised patients of the possibility of a diminished immune response to the vaccines.
Reference: https://acaai.org/news/american-college-allergy-asthma-and-immunology-updates-guidance-risk-allergic-reactions-mrna
SOURCE: American College of Allergy, Asthma, and Immunology
The American College of Rheumatology offers additional guidance for people on immunosuppressive therapy, and discussed in some detail the issues around vaccination and herd immunity. Here is the link:
https://www.rheumatology.org/Portals/0/Files/ACR-Information-Vaccination-Against-SARS-CoV-2.pdf
Still, I think 2021 will be a happy new year. The most vulnerable should see the vaccines available in the coming weeks! And yes, it will take a lot to get our citizens to the level of herd immunity with mostly the logistics in the news, but really it is denial of the risk of COVID 19 allowing this head in the sand thinking. Take a hard look at the stats and your risk. Then make a smart decision.
Nancy

Epidural? For Fibro?

January 18, 2021

Actually, no, not for fibromyalgia.. Well it does help some of the fibromyalgia pain, but that is not how it helps the most.

I’ve mentioned in previous posts about the injections that I get. I mostly talk about the trigger point injections & less about the epidurals..

The epidural medication, Triamcinolone, is a corticosteroid which is an anti-inflammatory. It works by activating natural substances in the skin to reduce swelling, redness, and itching. I have osteoarthritis in my lower back from S1 to L1, if I recall correctly & it’s probably progressed since the original diagnosis about 7-8 years ago. Osteoarthriti is the degradation of the spinal cartilage making the bone change resulting in pain, stiffness, and swelling..

The process is done by anesthesiologist. He gives me a local anesthetic, and then a second deeper anesthetic before finally injecting the corticalsteroid into my back through the notch in my coccyx aka the tailbone. He then also does the regular trigger point injections.

A visual representation of where the needle is injected to.

After the injection I am monitored for 30 to 45 minutes before I am permitted to leave to ensure I’m not reacting badly..

The initial results are awesome, always. Later in the day when the local anesthetics were off the area of the injection is sore. Fortunately at that point it’s later in the day and I’m slowing down anyways.

I typically get two to three epidurals per year starting in November or December & ending in March or April. For whatever reason my osteoarthritis tends to be worse during the winter. I usually get them every 7 and 9 weeks. I would say my initial pain level drops to ½-1 /10.. Considering I’m anywhere between a 5 and an 8 when I go in to get these shots, that’s amazing!! The effect does tend to wear off and is pretty much worn off in 7-9 weeks. The shortest time I’ve gone between shots was 5 weeks.

They help me. & For a short while, I almost feel pain-free!