Symptoms of Chronic Fatigue Syndrome (CFS) have finally ceased. However, fatigue is also a notable symptom of Fibromyalgia which requires re-managing. There are also a few serious symptoms of Fibromyalgia that have arisen since the flare-up in August that needs time to be treated. I’m now focusing on these symptoms and sorting through Arthritis issues aggravated by the CFS.
The Cortisone injection I had before Christmas has brought much relief to the Arthritis in the L4/L5 area. Unfortunately, the Sacroiliac Joint pain returned five days after the injection. This pain is managed most days with Holistic and Topical treatments avoiding further issues with medication reactions. I have an appointment with my spine specialist in early March when the next step in the treatment of the Sacroiliac Joint will be organised.
Living with three chronic illnesses has not been easy, but knowing I have ongoing support makes a huge difference to both of Norm and myself. Be assured there has been a significant improvement in my overall health.
This update has been a little slow in the making but things change every day. We enjoyed a few days rest up the coast early December before a long fun-filled weekend with the youngest two grandchildren in Sydney. Road trips left my pain levels screaming but thankfully, after a few hours of rest, pain eased each time.
I’m blessed that the worst of the chronic fatigue and fibromyalgia symptoms seem to have subsided. However, flares happen at anytime of day and night which means planning to go anywhere or do something can change in an instant. Some symptoms have persisted which are now considered by the medical team as not related to these two conditions. These symptoms are now being investigated further.
A two hour road trip to Newcastle mid December for an CT-guided L4/5 facet joint block with cortisone injection went well. For the first week the Cortisone did its ‘textbook’ job. After that the Sacroiliac Joint pain returned. Although I’m not on the arthritis pain medication again, topical treatments are getting well used. My next appointment with the orthopedic specialist is not until March but I’m keeping him up to date via emails. In regard to the Radio-Frequency Neurotomy (RFN) the specialist had commented on in his report, it’s a Sacroiliac Joints Procedure. We have made further inquiries and this procedure will help with – the probable ‘pain generator’. This procedure would be done under a sedative anesthetic which is why the my spine surgeon/orthopedic specialist needs to do the procedure himself in Sydney. This procedure will be discussed again in March at my appointment.
In conclusion, reports from my medical team are promising. It’s good to have had a diagnosis (or 2 or 3), but now we are looking at the prognosis. If we view diagnosis as the discovery and prognosis as the prediction/outcome, that’s where I’m at. I have been able to return to walking which also helps with pain although walking often triggers pain. Unpredictable fatigue is keeping me at a slower pace.
A typical specialist report. Undecipherable and needing a degree to understand. He lost me after radiological activity noted. Huh!
Anyway, I have a CT-guided L4/5 facet joint block with cortisone appointment in Newcastle on Dec 16th. Even if this is slightly successful/helpful, it will be just a temporary fix and will proceed to a radio-frequency neurotomy in the future (Please explain) which I will need to travel to Sydney for but no future surgeries are expected. There’s a lot more about the sacroiliac joint being a pain generator. What does that suppose to mean? Butt what I do know is that it’s painful to sit.
On a more positive, understandable note, my chronic fatigue and fibromyalgia symptoms have eased some. Sleep has found to an acceptable pattern but could be better. Fibromyalgia pain persists, especially with these crazy summer storms, high temperatures and sudden weather changes.
Day time naps are a new mandatory activity. Thankfully, only the arthritis medication is needed – at least until cortisone injection.
I’m now exploring a new ‘normal’ although it’s slow and frustrating since every day is different. I have been able to take short walks even if it’s just around Bunnings or shopping malls. The problem I have with walking the aisles of Bunnings is that I stop often and buy stuff – like plants and anything related.
I have been very blessed and encouraged by get well cards, text messages, emails and prayer support. Thank you.
• I did not cause my illness • I can do everything right and still struggle • Take one day at a time at my own pace • Pain is real but it’s invisible to others • Pain levels change without an invitation • Asking for help doesn’t make me weak • If I did it today, it doesn’t mean I can do it again • Ignore those who think they have all the answers • Rest when I need it • It is OK to cancel plans
To date there doesn’t appear to be any significant improvements. However, we have found that the new medical team, tests and treatments have been very informative and helpful as I move forward to recovery.
The medical team reportsin brief have indicated that the most recent Fibromyalgia and Chronic Fatigue flare-ups were so severe that they triggered a sudden and massive biological shift (how the body works). These biological shifts usually happen as we age. In simple speak, my biology flipped on end overnight. Now that we understand what happened we can work on adapting our lifestyle for an acceptable recovery. All blood tests results remain at good levels with no sinister underlying causes.
Arthritis Findings in brief: The spine surgeon is pleased with the low general wear and tear after the previous surgeries in 2017. No further surgeries are anticipated in the future. However, arthritis has increased in its severity and has extended from the previous L4 to beyond S1. A bilateral CT guided Facet Joint block Injection has been ordered to be done by a radiologist. There are no guarantees on its success, and the surgeon has already advised that he may need to follow this up withan injection of a high dose (unpronounceable) medication into the area, but deeper into the spine which can only be done by him. A new year decision.
Moving forward will be slow but we can look forward to some positive outcomes. With so many life-threatening reactions, most medications have been ruled out. Planning ‘one day at a time’ is the number one priority.
Although I live with chronic illness, and it’s definitely not a laughing matter, I couldn’t resist smiling when I saw this. I hope it makes you smile too.
Symptoms of my Chronic Fatigue Syndrome (CFS) diagnosis confirmed almost a month ago are still very unpredictable and challenging. My routine sleep hasn’t yet found its new balance and over the counter medication and natural remedies haven’t helped. After my body reacted badly to the prescription medications my doctors won’t take any chances with my every increasing allergies. My reactions have often been serious. One reaction required a 3am visit by paramedics who, after stabilizing me, transported me to the Emergency Department. It took almost two weeks to recovery from that reaction.
I believe that the number of restful sleep hours I do have most days are assisting with my overall recovery. For now, while irregular sleepless nights and unpredictable fatigue bursts persist, I’m thankful for all the restful sleeping hours I do have. There doesn’t seem to be any explanation for these hours on end of no sleep, only that it’s a part of CFS. As I’m reminded by my medical team and the Australian Chronic Fatigue Support Foundation, it is why CFS is recognised as a ‘chronic’ illness. Every victim, I mean patient, is different just as it is with Fibromyalgia (FM). For now an arthritis pain medication I’m not reacting to is helping me while my regular exercise daily walking routine is non-existent.
Norm and I often received ‘opinions’, ‘remedies’ and non-qualified ‘medical advice’. Most advice comes with no knowledge or experience of CFS, FM or even arthritis. We know this is just their way of wanting to help and see me well again but it can be frustrating.
Although the CFS symptoms can often be suffocating I have found my wakeful hours more productive this past week. I have enjoyed reading who-done-it mystery books as well as getting back into writing. Finding time to do a few of the things I once enjoyed, even if it’s at a much slower pace, has helped with my healing.
I can’t manage anything much in the garden beyond watering or picking a few vegetables. Norm, although not thrilled about it, has been willing to follow directions on small projects like removing end-of-season plants and trimming. When we first designed the garden, we did so with low maintenance, dodgy knees and backs in mind in the future and it’s paid off. We’re reminded often how grateful we are for our son’s skills and expertise. A once lifeless paddock of a backyard is now a well-drained, safe and functional area which has become my oasis. A garden filled with seasonally changes, life and even rest. The most rewarding part of the garden is to sit and enjoy the rewards it brings including the wildlife that visits daily.
By the time you read this, I should have had my surgery, or going into theatre. I’ll be home tonight. It will be over and done with and ready for physio before Christmas. It’s just another small arthritis hic-cup in my life.
(Please explain) which I will need to travel to Sydney for but no future surgeries are expected. 
There’s a lot more about the sacroiliac joint being a pain generator. What does that suppose to mean? 
Riverside Peace 
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