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TWENTY TIPS FOR NEWLY DIAGNOSED FIBROMYALGIA SUFFERERS…

If you have been newly diagnosed with Fibromyalgia here are a few tips to help you deal with the condition.

1. Never be afraid to ask for help, be it with the shopping, cooking or cleaning. As most sufferers tend to ‘look fine’ most people do not realise the pain they are suffering inside, so if you don’t ask you won’t get help.

2. If work is leaving you exhausted and in pain, then design a flexible plan that works for you and your boss. Ask about working from home part-time, or setting your hours for earlier or later in the day so you can be more productive, during this busy time.

3. Don’t try to always put on a happy face. Your loved ones need to know what makes your symptoms worse.

4. Rest, rest and more rest, every little helps to recharge your batteries. When you feel that overwhelming urge to sleep try and get forty winks.

5. Support groups can play an important part in the lives of people with chronic illnesses. Whether in person or online, they offer a safe place to talk with others who may share your frustrations and concerns.

6. Tomorrow is another day and with Fibromyalgia tomorrow can be a more comfortable day, so try to not think negative when you are having a bad day.

7. Keep all your ‘helpful’ pain relievers on hand, be it a hot water bottle, pillow, cushion or whatever you have that helps your pain.

8. A useful purchase for going out is a lightweight portable stadium seat which you can find on Amazon.

9. Also a sciatica support cushion can be great to have in your car while travelling. I could not manage many journeys without mine. There are lots to choose from.

10.This is an Adjustable Tripod Walking Stick and seat. If, like me you cannot stand for long in a queue then this is just perfect. The Height adjustable walking stick seat is designed to provide support and comfort and provides a stable and comfortable seated position when you need a break from standing.

11. Have a very hot bath or a hot shower. When it comes to reducing pain, soaking yourself in super hot water may not be your first thought but it can actually provide significant relief. My day starts with me taking my meds then having a hot shower. I feel totally different twenty minutes later. Heat, heat and more heat helps with pain.

12. Try and stay as active as possible which is a hard thing to ask if you are in pain but staying active is a powerful way to reduce daily pain. A walk a day may keep the Doctor away. Ten minutes can make a big difference to your health and well being then increase it to 15 or 20 minutes. Your GP or physiotherapist may be able to refer you to a health professional who specialises in helping people with fibromyalgia work out an exercise plan.

13. Leave the house cleaning until you are on a good day and do it in stages and not all at once. Always pace yourself to help avoid flare ups.

14. Try and get a rest every day. Sleep is very important for Fibro sufferers so if you have had a bad night rest for an hour in the afternoon. I have a daily nap between 3-4pm and if I miss it I feel tired late afternoon which then seems to trigger more pain.

15. Shop online then you don’t need to carry anything but still get your walks in on a daily basis if you can.

16. Keep a trigger journal it will remind you what and when you seem to get your flare ups.

17. Learn how to relax. If you have fibromyalgia, it’s important to regularly take time to relax or practise relaxation techniques. Stress can make your symptoms worse or cause them to flare up more often. There are many relaxation aids available, including books, tapes and courses.

18. Take up a hobby. Find something that really relaxes you. At the moment I am really into adult paint by numbers and find it very very relaxing to do. I also like knitting but do need to pace myself with knitting as it soon affects my arms.

19. Read up on as much information as you can about Fibromyalgia.

20. Buy a Fibromyalgia Awareness Medical Card.

Source: NHS Fibromyalgia News Support Fibro Creaky Joints Amazon

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THE MANY SYMPTOMS OF FIBROMYALGIA…

People living with an “invisible” illness don’t just have to content with chronic pain and fatigue, there are many other symptoms with Fibromyalgia which include –

Chronic widespread pain without apparent cause

Fatigue

Sleep Disturbance

Cognitive Dysfunction

Morning Stiffness

Cramping and Muscle Spasms

Restless Leg Syndrome

Digestive Problems

Headaches and Migraines

Skin Sensations

Balance Problems

Sensitivities 

Tender Points

Depression

Difficulty Speaking

Anxiety

But the most distressing thing about Fibromyalgia is people not recognising, or even believing, that your experiences are real. Even today, there is still a significant lack of understanding around fibromyalgia in terms of its causes, diagnostics and how to best manage it.

According to Bupa, it affects up to one in 20 people. Des Quinn, chair of Fibromyalgia Action UK, said: “We frequently hear of doctors saying they do not believe in fibromyalgia to a patient.”

Some of the typical points Fibro patients say –

Looking ‘well’ does not mean I am fine, I have just made a real effort today.

Not getting a diagnosis for years and years can be soul-destroying and make your symptoms worse through the stress of trying to get a true diagnosis.

Some say they have to constantly explain what it is they have which can be exhausting. Just because you do not walk around with something in plaster does not mean you are not in awful pain.

Lots of people with fibro still work but struggle on some days more than others but having an understanding boss is one in a thousand.

Every day is different which means you cannot always plan ahead. But when you are on a good day you may end up doing more than you should and then suffer from it afterwards.

Sufferers can be fine one minute then it suddenly comes on big time and its an effort just to walk.

The chronic fatigue with Fibro is very difficult to explain but imagine you stayed up ALL night for a couple of nights on the run and that is how the fatigue feels. It totally takes over.

Some may comment on the different types of medications you can take making it look easy to just pop a pill and the pain will go away. That is far from the truth as most of the pills have awful side effects and don’t always work. Its a balancing act to work out what helps the most.

‘Pace Yourself’ seems to be a very popular phrase used by many people including the professionals. If it was as easy as that then we would all be in a much healthier state. A bell doesn’t tend to ring until you have overdone things and you only overdid things because you were on a good day.

The change in seasons can affect us badly and according to Fibromyalgia-symptoms.org, there are five “major weather factors” that can affect our bodies. They are temperature, barometric pressure, humidity, precipitation and wind. I am afraid the weather is something we cannot control.

May, as you can see from many of my posts is Fibromyalgia Awareness Month so please take your time to read through the many posts going out this month to help people understand the condition a bit more. Here are six facts about Fibro to remember.

  1. It is a real disorder with measurable biological abnormalities.
  2. There is a specific set of diagnostic criteria developed by the American College of Rheumatology to be used for diagnosing Fibromyalgia.
  3. It affects men, women, and children of all ages.
  4. Several studies have revealed markers of inflammation in Fibromyalgia.
  5. Exercise, when done properly, can help to reduce Fibromyalgia symptoms.
  6. Although there is no cure for Fibromyalgia, it can be managed with the right combination of treatments and therapies.

Source: Fibromyalgia Symptoms

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