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avatar Courtney_J

avatar reikiboo64

avatar DISMAS

@Courtney_J 

Hi

Well where do I start!

I get frustrated by the constant exhaustion in my muscles. The slightest action feels like I have just done a work out to that part of my body whether it be an arm or a my legs for example.

I am aware that my disease isn't managed at all yet even though I have been diagnosed 18 months or so. It just feels like Russian Roulette with my medication as to whether I will be allowed to continue it from one blood test to the next  as my liver rebells.

Everyday a new part of my body starts to creak and feel stiff and painful. To be honest it's scaring me just how quickly things are progressing. It is really getting me down. I can't walk far, self care is difficult . I'm determined to be independent so I'll struggle to succeed in the task.

I want to have the energy to get through my day as I work full time running a women's refuge which is mentally very demanding but fortunately not too physically. I'm so tired at the end of each day. It's an uncomfortable exhaustion. I also suffer from Narcolepsy diagnosed at a similar time to the arthritis, and this also gives me fatigue- I have a double whammy of fatigue.!

I am shielding at the moment so I have had a chance to rest. The first week off work I slept solidly and now I feel more rested. I confess I am anxious about becoming so  exhausted again but I am determined this illness won't stop me from doing what I love.

Overall I feel distressed with it all and just want it to go away, My healing has gone to pot. I have put weight on as I can't exercise, I dread going upstairs and at times I just don't know how to deal with it.

Sorry to sound so down hearted, I just don't feel I can bring any positivity to this discussion.

x..

 

 

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avatar Richard46

avatar baheersayed

avatar Somya.P

Having had epilepsy for over 50 years, my skin has been affected by allergic reactions and more due to constant medications. I am also allergic to wheat, dairy, protein, spices, and seafood which cause havoc on the skin. Perfumes, colors, fragrances, and chemicals in washing powder, dishwashing liquids, etc. also cause problems.

I stopped wearing makeup several years ago due to reactions, and only use hypoallergenic soaps, creams, and shampoo/conditioner.

My skin has always been very dry and I have found the Simple range good for skin problems/sensitivity. I also use Vaseline Repair Cream after a shower which definitely has helped rejuvenate dry skin.

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avatar Petecrawshaw

avatar DebsBrookes1967

avatar Smudger

Hi. New to the group,I have ostiiarthritis plus sciatica and tendonitis. For this happy arrangement I'm on morphine patches ,have been for around 20 years. Last night which makes the 3rd Time ever I was cold turkey as the heat just peels away the patches by making me sweat more moist than anything . But I have an arrangement that I have 4extra 5mg patches for as and when I need them cos if you run out before the alloted date boy ,are you in trouble. And going cold turkey at the thanks to the NHS is just great. The hell can i do to stop them coming off my arm , and they are taped on. But that's my night last night ,shaking twitching sweating as the house is like an oven an to top it all, I've been in a flare up for the last week. So if any one out there goes through the same ,ehatr do you do if you have no patch?????


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avatar wednesday

avatar Hippymum

avatar iamembe

Hi everyone

Ive recently become a member on 16/08/2015.  I also was diagnosed with an over active thyroid and had radio-iodine treatment to correct this. in my case I was also given a suppresent drug to kill the thyroid off which when left unmonitored  left me really ill.  I could not explain how I felt to my family,  I was in a black hole with a big black cloud above me and could not see a way out.  I went from a person who everyone went to for help and advice to a person who did not want to know anything bad in the world, who was frightened to go out alone, not sleeping, severe nightmares and frightened of what the future might hold. All because I was a person who was given a thyroid suppresent drug to treat a thyroid that did not exist.  I could go on no longer and as my next revue was not for 6 months I paid a visit to my family doctor and tests revealed that I should never have been left taking this medication without supervision and he immediately prescribed Thyroxine 150mg and contacted my consultant. I feel a lot better now and my quality of life is greatly improved.  I said nothing to anyone and kept my symptoms hidden for so long because I felt ashamed and a weak person.  I have to be the strong one as our daughter has been disabled since birth  (27) and the future is always a worry for us, I also come from a large family who have always come to me for help and advice and there were times when all I have wanted to do was crawl into a hole, but stupidly I hid this and helped them with there problems. I have also had cancer of the mouth and my left kidney has failed but is back on the road to recovery, I have also had chronic back and leg problems also a lot of fatigue some of which were linked to an over active throid but there is always someone worse off than you.  Anyway....yes I also cannot stop putting on weight and my thick head of hair is also on the thin side....so this is a common characteristic I can presume.  I hope to hear from other people with similar symptoms.

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avatar laney365

avatar lesmal

avatar LizziB

I had a heart attack and bypass surgery and got told off for drinking too much coffee! I had to change to decaf and now I am used to it and it tastes ok. It’s taken some getting used to but I now only have normal coffee a couple of times a week. I also have AF which a lot of caffeinated coffee is a trigger .

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avatar lesmal

avatar charlesdickens99

avatar Smudger

@LizziB

Hi, all I can say is the meds help for a while, it's all about knowing what your pain tolerance is. And no t taking meds all the time. Stretches physiotherapy etc always made mine worse 1 hour session would put me on my back for 2 days. Every week for 6 months they never listen when you tell them.

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avatar Valichari

avatar Courtney_J

avatar NicoleS

@Courtney_J My symptoms came on rather suddenly, almost overnight. I thought at first I was having a stroke because you hear about the face drooping when that happens. Then I thought it was stress or fatigue but then when it didn't go away I knew it was something else. I went to my GP who told me to go to an eye doctor. Then there was some back and forth with the GP who finally ordered tests for me. It was awful waiting for the test results.

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avatar Silverlady

avatar BAZWHEAT

avatar KPangela

I am definitely a night owl and have been ever since I was born. My Mother told me that I kept her up every night, probably for at least my 1st year or 2 and 1 of her doctors (I was born in the US but have lived the majority of my 71 years in Lancashire/Cheshire) told her that I had "my nights and days mixed up" except no 'interventions' ever changed this! As a teenager I could sleep for elongated lengths of time but as I grew older, I seemed to naturally develop a more 'normal/acceptable sleep pattern, receiving between 7-8 hrs. Presently, my sleep pattern has "gone awry" which is probably due to having MS (for 44+ yrs) although I gratefully remain largely independent. I have increasingly & unintentionally, been recently falling asleep, while watching television, and this REALLY "throws a big spanner" in my best intentioned goal of establishing a better balance between getting enough sleep and never possessing enough energy to achieve anything I'd planned for any particular day😅! Currently I have NO problems in quickly falling asleep but incessantly waking up feeling so cold❄ , shivery⛄ , my limbs being so spastic (stiff/rigid) & my mind feeling MORE confused than it is when I'm wide awake🙃, my reluctance to getting up has become 1 my biggest battles! I WILL "win this" and wishing everyone here, continues to win (or least better manage) yours💗 x

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avatar Writewheel

avatar whitecross1955

avatar anne2211

An extra tax should be put on alcohol which should go to the NHS for the care these people.

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avatar Hippymum

avatar BAZWHEAT

avatar lesmal

Hello everyone,

How are you today? 🙂

Let me tag some of the newest members to share their experiences with us!

@Louise71 @AdamSouter @jadeflynn @tothelight @rob.rylance @Peeshe @surferjoe @DeepaS @thyroidmd @Recoveryforlife @IanKay @Amberfloss @Deni1968 @brendasanntouchet

Feel free to share here!

Take care,
Berthe

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Pharmacist, Hela is a data scientist at Carenity. Using her scientific and medical knowledge, she supports various project managers to carry out real-life studies conducted with members of the community. A graduate of the Faculty of Pharmacy of Monastir in Tunisia, Hela holds a PharmD. After an internship as a market analyst at the Ministry of Public Health in Tunisia and an internship as an assistant diabetology product manager, she decided to complete a specialized master's degree in Pharmaceutical and Biotechnology Management at ESCP Business School. Hela joined Carenity in May 2022 as a data scientist after completing her end-of-study internship at Novartis as a junior product manager working with solutions for severe asthma. Through her various experiences in hospitals and pharmacies, Hela has had the opportunity to work closely with patients and has developed a deep knowledge of chronic diseases. 

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What our members have to say

These are quotes and opinions submitted by Carenity members. Here patients, their loved ones, and those interested in their health share their experiences and opinions about the Carenity forum and what they have learned from talking to other patients.

"My mother has MS and I've grown up seeing how it affects her. It's so painful to not be able to change it. I'm happy to have found ths site, so I can give advice and support to anyone with MS."

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Ashleigh
Multiple sclerosis, Relative
33 years old

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Pete
Crohn's disease, Patient
28 years old

"I am always looking for good advice on living with cardiovascular disease. My brother had a stroke 3 years ago and it was a wake-up call for the whole family. I think it’s great to talk to people who share similar experiences."

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Eddie
Stroke, Relative
56 years old

"I've had osteoarthritis for about 20 years now. I have been on several NSAIDs, corticosteroids and recently I had knee surgery. I hope my experience can help others."

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Gina
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73 years old

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Kevin
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64 years old

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Julia
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