Help Needed : Hi all, my first post on... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Help Needed

Ade1965
Ade1965

Hi all, my first post on this site and looking for some help and guidance. For sometime i have been suffering with a muscular flu like 'aches and pains' all over my body, mainly felt in my legs and arms. It comes and goes and the pain level can be from a low level to really high and debilitating, often making me feel nauseous but I've never actually thrown up. At its worst i have trouble getting through the day and i end up in bed unable to function, sometimes it lasts for just a day or so but it can sometimes last for weeks at a time too. My GP has sent me for arthritis tests but nothing has confirmed that this as being the cause, which i'm not surprised at, the aches and pains i am experiencing is not skeletal but muscular. The only way i can describe the pain is flu like systems of aching all over but without the cold symptoms of a cough and congestion etc. After some research and reading up the symptoms of Fibromyalgia, which i never new existed, i found myself ticking nearly all of the boxes of the common symptoms related to it. I have mentioned this to my GP which they confirmed maybe a possible cause but need to discount all other possibilities first. I'm looking for some guidance from anyone who thinks that i am indeed suffering from Fibromyalgia and any suggestions on how i can ease the aches and pains and any other help or guidance, my GP doesn't seem too bothered and has stated that after suffering with this for so long now, that it cannot be too concerning!!! Not helpful...any help would be gratefully appreciated. Many thanks :-)

11 Replies
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The way you describe the aches is exactly how I have described my muscle aches to people just like the flu but without the respiratory symptoms. When in a bad flare even my toes hurt. The trouble with fibro is at the moment there is no specific blood test that tells you you have it so the doctors do tests to eliminate other illnesses like Multiple Sclerosis, lupus, RA which have some of the same symptoms if they reveal nothing they are left with fibro. Some people with fibro have a lack of Vitamin D and magnesium and your doctor could do a blood test for those. If you are lacking they can normally give you supplements that are stronger than you get over the counter. My friend found when those two were back to a normal level his aches and pains halved. When the aching is really bad a soak in a warm bath for say half an hour that has several handfuls of epsom salts in it can really help. Some people have had joy with magesium sprays. I am on pregablin which has helped my pain, not taken it away but definately taken the edge off. On our mother site Fibromyalgia Action Uk there is alot of brilliant information about different treatments including exercise. I don't know what choice of doctor you have but it might be good to try and find one who is a bit more helpful. Goodluck.x

Ade1965
Ade1965 in reply to rosewine

Thank you Rosewine, that’s very helpful information and very much appreciated x

When I was ill a year last January I described it as being like the flu but no cold symptoms. At that time I didn’t have any pain either. In September it happened again the same but with immense pain.

Ask your gp to refer you to a rheumatologist. I had a ct and mri scan and bloods taken and nothing showed up on any of them.

As far as what you can do I find heat helps. A hot bath with Epsom salts, microwave pads or my latest and best purchase is like an electric cape. Bought it a few weeks ago from Lidl for £14.99.

My gp told me when I’m having a good day do as much as I can. I find if I do too much then the fatigue can be bad for a few days afterwards. If I’m going out I don’t do anything that day before and sometimes the day before to conserve my energy.

Hope this is of some help. I’m going on a chronic pain course next week so when diagnosed if any good could be of benefit to you 😀😀

Ade1965
Ade1965 in reply to Pilipala18

Thank you Pilipala, that’s very helpful.

Hidden
Hidden in reply to Pilipala18

Yeah Pilipala - I am still learning to try to pace my shopping with the hubby - BJs, Wal-Mart and Kroger in a couple of hours can leave me hobbled for the next two days...

Check if you are gluten intolerant ie cut out processed foods and anything with wheat flour in it for a month. It took me two weeks to feel better - symptoms of gluten intolerance are very similar it seems.

Hidden
Hidden

Hi Ade - Welcome to the forum you don't want to belong to, but here you will find warm, wonderful and caring people. Some of the signs of Fibro are body wide aches, in the muscles, and on both sides of the body. The other thing I am facing right now is that I have Severe Chronic Sleep Hypopnea and that actually causes body wide muscle pain as well. I am waiting for my CPAP fitting to tell me how much of my pain is that. Then I will know if some of it is Fibro.

Gentle hugs and wishes for getting it straight

Ade1965
Ade1965 in reply to Hidden

Thank you for your message, its much appreciated. I have been having these symptoms for a long while now and its progressively getting worse, as is my frustration. All made much worse last May when i was diagnosed with having bladder cancer, 2 tumors were removed and a course of chemotherapy thankfully followed very swiftly! This was a wake up call and made me prioritise my whole life, including the effects of the Fibro, which i had to try my best to ignore. Thankfully i am currently cancer clear and due to have further tests every 6 months. So I can now try to concentrate my thoughts into sorting the Fibro, however my GP is still going through the process of illuminating every other possible cause before diagnosing me as having Fibro. Unfortunately my patience is wearing thin after being through so much in recent months. I am 53 years of age and have a business to run and i struggle daily sometimes to stay focused, mainly due to the body aches and pains. Thank you again for taking the time to reply, i'm very grateful :-)

Hidden
Hidden in reply to Ade1965

I'm so sorry for the cancer - my husband had prostate cancer so I understand the fear that generates. Like you, he is now cancer free, so congratulations on that - it is a wonderful thing. Running your own business is really hard, especially if you ARE the business. I had a small business for a while, but the RA killed it unfortunately (many of us have numerous AI (autoimmune) conditions... Sending you gentle hugs and best wishes for fast relief...

Fibro is a condition which shares many symptoms with other conditions, ME/CFS , and even MS. Quite often it also has other underlying contributory factors, such as hypothyroidism and IBS, or Coeliac disease. All these need to be excluded before a diagnosis of Fibromyalgia can be confirmed. It is a long journey, unfortunately.

Hidden
Hidden in reply to Midori

Absolutely!

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