Polymyalgia Rheumatica

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I'm new here!

Hi, my name is Keyes2Mudd2. This is the first time I have ever written to join a support group. I hope I am sharing the correct information.

I am 72 years old, married with 4 grown children and 4 grandchildren all in college. My husband and I have been married for 47 years. (second marriage for us both)
We were blessed to retire when my husband was 50 and I was 45. Our company offered early retirement and we took them.

After we both retired we continued our love of travel around the world for years till my health got so bad it was to hard for me.

At that time we decided to move away from home for my health (warmer climate, less stress and a slower life). We founded a non profit that grew so fast and we were blessed to help so many people. It became to hard for me because we grew to love our clients and lived though their stressful times.

We moved to Thailand our favorite destination we visited during our travels. We still live here and love it. My health has improved we believe because of the weather, great food, lots we can eat for our program, much less stress, wonderful people and a wonderful church we attend that is very supportive of us and our health issues.

We are happy with the medical care in Thailand. Most doctors are aware of care for me and my husbands health problems.

Before we moved to Thailand for years I was diagnoses by many doctors but non ever fit my symptoms or helped them. So many Doctors, so many disappointments with large bills and low improvement.

So we decided to move and stayed in Bangkok for a while to attend their hospital for a diagnosis. After tests etc. and the same routine with other doctors. In Bangkok in one week I was diagnosed correctly with:
Fibromyalgia PRIMARY
Polymyalgia Rheumatica SECONDARY and
IBS with many side symptoms from upper 3 health issues.

Fibromyalgia - Going through my life history I have had FIBRO. symptoms from 1965 approximately.
Polymyalgia Rheumatica - same time as FIBRO. when we moved to Thailand.
I was diagnosed with IBS in 1980

You may notice I write a lot and think I may talk a lot. Yes I do. I believe it is wonderful to meet new people. We can always learn something from each person. My husband calls me a perky person. At my age it is getting much harder to deal with health issues and old age. Not so perky anymore.

In the last month I was diagnosed with cataracts in both eyes, slipped in the shower and reinjured my back from a previous back surgery. Wearing a brace now because I want to be supportive of my husband. He was in a car accident with our driver doing shopping. No injuries. Then my husband was diagnosed with cancer in 2 areas on his face and leg. He is recovering after surgery. He is my rock/caregiver. After he recovers I will follow up with back surgery. I am not sure if my story is unique. I would like to read other peoples posts and learn from them. Prayers for ALL

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FTD

It’s official. My beloved husband is dealing with Frontotemporal Dementia. His memory is largely intact but his behaviour and personality are taking a major hit. He is completely oblivious to these changes except that he’s noticed that he gets irritable quickly. # #Asthma arthritis # fibromyalgia #PolymyalgiaRheumatica

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New challenges # #Fibromyalgia polymyalgia rheumatica #Asthma #Arthritis #Migraine

In February, my husband of 33 years had a mild stroke. Since he was hospitalized, I spoke to doctors about my concerns that some of his behaviour did not seem normal- at least not for him. Tests have been ongoing since then, and we’re still not finished; however, the doctor informed us at our last appointment, that all signs point to dementia, possibly Alzheimer’s. The doctor canceled my husband’s drivers license which gave him independence and pride. In one way it’s a relief; yet we are now dependent on others for rides anywhere we need to go. I don’t think he truly believes that he has dementia, but he’s confident that God will be with us even in this situation. We don’t have a transit system here and we live several miles out of town. This will be a huge change and challenge in both our lives please pray for us as we embark on a difficult journey.

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Atarax?

I have been prescribed Atarax to help with situational anxiety (in addition to desvenlafaxine and regular venlafaxine for ongoing depression and anxiety).

It makes me SO sleepy but I don’t actually fall asleep. Is this normal? I have 6mg melatonin for bedtime too. I’m already exhausted from fibromyalgia, MCTD, polymyalgia rheumatica and Giant Cell Arteritis. I’m taking a ton of prednisone and hate the side effects. I’m stressed to the max and in a bad situation where I’m being harassed by our tenant who is having delusions of owning the house and has threatened to put deadbolts on our doors so we can’t get into our own home (he has the downstairs unit, we are upstairs). Needless to say, my husband is going to housing court tomorrow to file for eviction.

I have a plan to sue this piece of work for harassment and reimbursement of my mental health related medical bills stemming from it. Copays so far, over $600 and climbing.

But my question is, will the Atarax help? Does it take days to work, taken on a schedule, or can I take “as needed”? The ED doctor a few weeks ago said as needed, the one yesterday prescribed for every 6 hours. What’s your experience with Atarax?

Thanks.

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Held hostage by our bodies

Part 1 of 2 Living with a chronic illness feels like our bodies are holding us to ransom. We get no rewards for our attempts to function like a “normal” person.

We struggle with the everyday things that most people take for granted.

Managing life with a chronic illness(s) is exhausting. We experience multiple layers of fatigue. It’s important to note that fatigue is different from feeling tired.

There are 3 different types of fatigue

Transient fatigue is acute fatigue brought on by extreme sleep restriction or extended hours awake within 1 or 2 days.

Cumulative fatigue is fatigue brought on by repeated mild sleep restriction or extended hours awake across a series of days.

Circadian fatigue refers to the reduced performance during nighttime hours, particularly during an individual’s “window of circadian low” (WOCL) (typically between 2:00 a.m. and 05:59 a.m.).

Fatigue is categorised as either physical or mental.

Common symptoms associated with fatigue can include:

aching muscles

apathy and a lack of motivation

daytime drowsiness

difficulty concentrating or learning new tasks

gastrointestinal problems

headache

irritability

slowed response time

vision problems

The difference between tiredness and fatigue is more substantial than you may first realise. Tiredness is the way we feel when we don’t get enough sleep. Fatigue is a daily lack of energy that can’t be solved through greater sleep alone. Fatigue, therefore, is caused by more than just our sleeping pattern or daily activities.

Most of the time fatigue can be attributed to one or more lifestyle issues, such as poor sleep habits or lack of exercise. Fatigue can be caused by a medicine or linked to depression. Sometimes fatigue is a symptom of an illness that needs treatment.

If you feel you’re suffering from fatigue, which is an overwhelming tiredness that isn’t relieved by rest and sleep, you may have an underlying medical condition. It’s important to consult your GP for advice.

Prepare yourself not be taken seriously. It could take a few appointments and more than one doctor to be heard.

In my case, the first GP dismissed my concerns. I was there about something else. After she dealt with that issue, I told her my concern about my tiredness levels and not feeling refreshed after a good night’s sleep. Ignoring me she thrust the prescription slip into my hand. Giving me the “it’s time to leave” look.

I wasn’t at all prepared for her reaction. I left feeling like none of the doctors at the surgery would take my concerns seriously. I decided to see another GP and if they didn’t listen or help me. I would try every doctor at the practice until one of them was willing to act on my symptoms. Luckily for me, the second doctor I saw listened. A diagnosis of Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) took about a year. Once diagnosed I felt momentary relief. Finally, there was medical proof I was unwell. I wasn’t going mad, it wasn’t all in my head. I had a physical problem.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Layers of fatigue – Mille-Feuille of tiredness

This isn’t a medical term ( Miller-Feuille is French, meaning; 1000 sheets or layers) It’s something I created to help healthy people understand fatigue is much more than just tiredness. An early night and a long lie at the weekend simply won’t fix us.

Different layers of fatigue

Layer 1

Fatigue caused by chronic condition(s) Exhaustion that doesn’t let up might be a sign of:

Adrenal insufficiency

Amyotrophic lateral sclerosis (ALS)

Anemia

Anxiety disorders

Cancer

Chronic fatigue syndrome

Chronic infection or inflammation

Chronic kidney disease

COPD

Coronavirus disease 2019 (COVID-19)

Depression (major depressive disorder) or other mood disorders

Diabetes

Fibromyalgia

Grief

Heart disease

Heart failure

Hepatitis A

Hepatitis B

Hepatitis C

HIV/AIDS

Hyperthyroidism (overactive thyroid)

Hypothyroidism (underactive thyroid)

Inflammatory bowel disease (IBD)

Liver disease

Low vitamin D

Lupus

Mononucleosis

Multiple sclerosis

Obesity

Parkinson’s disease

Physical or emotional abuse

Polymyalgia rheumatica

Pregnancy

Rheumatoid arthritis

Sleep apnea

Stress

Traumatic brain injury

Layer 2

Fatigue caused by medication. If you take time to read the patient leaflet inside the box you will find an extensive list of side effects. Fatigue is a common side effect of many drugs. Especially the types chronic illness sufferers take. Additional fatigue is the las

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