Fibromyalgia Introduction and Resources

Bones, joints and muscles
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This is a discussion where users can post their signs and symptoms, treatments, history etc. There is also a list of useful resources links etc below. If any user has any suggestions about additions to this please send me a Private Message rather than replying here or trying to post links in this thread. Any links added will have to conform to the forum rules.

Patient leaflet on Fibromyalgia which includes a tab for Clical Trials (second link).

https://patient.info/health/fibromyalgia-leaflet

https://patient.info/health/fibromyalgia-leaflet/clinical-trials

PatientPlus article on Fibromyalgia written for GPs. Includes references to more in-depth articles.

https://patient.info/doctor/fibromyalgia-pro

Other groups in the forums that may be of interest.

Chronic Fatigue Syndrome/ME https://patient.info/forums/discuss/browse/chronic-fatigue-syndrome-389

Osteoarthritis https://patient.info/forums/discuss/browse/osteoarthritis-1632

Rheumatoid Arthritis https://patient.info/forums/discuss/browse/rheumatoid-arthritis-1968

Benefits and Allowances https://patient.info/forums/discuss/browse/benefits-and-allowances-3480

 

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I am 65 and just retired from a very physical job.  In Jan 2015 I had a fallen uterus and had surgery, the doctor said because of my age we might as well go ahead and do the history tony while we're in there.  I assumed he new best, he' s the doctor.  I worked last in June of this year, I have always been active, never sat still for long.  Now it's December and I can hardly move without one of my muscles hurting.  Over a period of about six months I have been getting severe muscle aches, pain and swelling first in my lower back, then my left rear cheek, now all the way down one side usually the left.  It is different every day, sometimes a muscle above my right knee will ache, I rub it to find that it is painfull.  Then maybe the next day my ankles are swollen and ache a lot or my right knee may be hurting, it's different every day.  Now the upper part of my neck aches so much I feel my head is to heavy to support it.  I cannot sleep on my left side anymore because it will take only 30 seconds and the pain comes back.  I don't sleep much either because my legs feel like lead weights tide to them and the severe aching wakes me up.  I was taking 2 aspirin at night and then two Ibuprophen in the morning to stop the aching and pain.  My feet, toes and hands would sometimes get contorted end when I tried to straighten them out they were so stiff I couldn't.  I have very deny eyes and now they also ache.  My doctor gave me sugar water shots and then another different shot in my right buttock so see what would happen, no change as they wore off.  I now am getting very lightheaded and sometimes neausous in the mornings, have no idea why and can't seem to explain the symptoms well enough.

Exrays were taken of my legs and my joints look fairly good for my age so it's not artheritis so I am stuck.  I dread going to bed because I know I won't get any sleep.  I cannot walk that far because it feels okay at the time but as soon as I stop I suffer like hell and I know once I lie down it will be painfull somewhere on my legs or hips.  If I keep standing up and moving it isn't as bad. 

If if anyone has any ideas or going threw the same I would love to hear back.  If you have any suggestions that would help that would be great too.....

Thanks for listening, that helps too!

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Hi.

I am 23, I have been told by the doctor that I have fibromyalgia and I can be in very bad pain at times but im dealing. I am having alot of the symptoms associated with the condition and I am struggling especially with the tiredness, memory issues and the mental strain its all putting on me. 

When I asked the doctor if my condition can get worse he said that it cant get worse however from research online I see that other suffers have stated that they have gotten worse and some have even ended up in a wheelchair. 

My question is can the condtion get worse and can it get me to the point where I could end up in a wheelchair?

Thanks

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Hi Martin, I'm much,much older than you and after always struggling with all sorts of symptoms over many years was diagnosed with fibro. I still struggle to accept I actually have it. Nothing as changed since the diagnosis,its useful to have a name. Having a name helps. Its easier with other people than just feeling crap and having no apparent reason for it! It sort of validates it somewhat!

I,like you,have read up on it and found people far worse off than I am,and its scary. I struggle a lot,but the hardest thing is mentally its so hard not to sink. I am not a paticually positive person ,but I do not and will not believe that I will deteriorate to the point that I will be virtually disabled. Try some of the hypnosis tapes on u tube. The subliminal ones are even better,you just listen to the music on those. Its bad enough coping with pain and symptoms but if you can keep yourself from sinking you will cope so much better. I have got worse but I've had it a long time and I still function( sometimes not too well granted!) Some people you are reading about will have other conditions as well. Everyone is different. Its hard ,but believe that ,everyone is different try not to sink and you have youth on your side. Don't go there!! We have the ability to make ourselves feel so much worse. Hang in there, yes it might get worse,but it might not either.

Hope I've helped a bit. X

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What about HRT? Hormones can play a role in body pain.

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Also contraction of muscles can indicate magnesium/potassium/Calcium deficiency

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Hi everyone, i am in my 50's and have been struggling with health and anxiety since my 30's and was told fibromyalgia. I was healthy as a child, had measles and chicken pox with no problems. Then at 16 got Glandular fever which i think is also called Epstein barr virus, i have suspected this could have been the trigger for my health problems. 

In my 20s IBS, Headaches, Light headed.

In my 30s IBS, Random muscle pains, ENT problems with violent headaches, earaches and sore throats, Palpitations, Panic Attacks, Viral jaundice.

In my 40s IBS, Increasing random muscle pains and severe back aches, Palpitations, Labyrinthitis once, started with severe sharp pains in hip-groin joint area making walking very difficult. 1 trip to A&E with sharp chest pains.

In my 50s restless legs twitching and cramping, Pains spreading over nearly all body mainly neck, shoulders, back, chest and buttocks. Burning in muscles from neck down back during flare up. Extreme tiredness. Sometimes get pains in the ear cartlidge on the side my head touches pillow. Now the pains have spread to include arms, hands and feet. I trip to A&E with sharp chest pains. Palpitations. Severe pains in both knees and unable to walk properly for around 7 weeks, going upstairs was the worst. Sleep difficult as pains around joint woke me and could not bear anything touching my knees. Now i live in fear of chest pains as i find those the most difficult to deal with. Bad heartburn and indigestion , endoscopy showed small hiatus hernia and small patch of inflammation. I manage it with gaviscon and diet as PPIs gave me side effects.

I have had MRI and CT scans. So many blood tests for everything and all come back normal. Regular ECGs which are also normal. I was suspected of having hyerparathyroid problem but test are now normal. I had vitamin D defincency but have managed to get that back to a better level despite the tablets causing indigestion.

I have seen a Rheumatologist and an Endocronologist . Hope you dont mind the long post but maybe some of you can identify with it I keep hoping the doctors are wrong and find something else more treatable.

 

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Hi

I think everyone's situation will be different. The pain is horrible and is wish it on no one but we all learn to cope the best we can and seek out the best treatment and advise to feel better. I find spending 45 mins on treadmill daily n 15 mins of weight is extremely important my dr told me this is your life and u need to move everyday and trust me if I miss a day my body pays for it. It breaks your spirit at times but I don't give up best to you

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Hello Frances. have you thought that the horrif cherst pains could be Costochondritis? I had a lot of problems for ages until I went to Out of Hours one time and the Doc there was amazing and identified three inflammatory problems that no one else had been able to sort out or identify. That still flares up as I am also Coeliac and have a lot of other related infalammatory and auto immune conditions, however I take supplements that do help. Chondroitin and Glucosamine and Magnesium help a great deal. Sadly the NHS seems to have little to offer when someone gets auto immune conditions, or maybe I'm missing something.

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Hello everyone, hope you are all feeling as well as you can. Ive been recently diagnosed with Fibro after a year and a half of chronic pain; no falls, no accidents or trauma - it just sort of appeared. As Im in my late 50's my gp initially diagnosed wear and tear/possibly osteoarthritis and prescribed me Tramadol. I was already taking Naproxen daily for sciatica, but the new painkillers didnt do anything other than make me feel doped and generally unwell. A 2nd gp diagnosed me with Fibro after quizzing me and a physical exam; I'd never heard of it. He weaned me off the Tramadol over 2 weeks and started me on Amitriptyline. My starting dose was 25mg. I could 'feel' it trying to work, and started sleeping better, but still had some pain; also, it seemed to lose effectiveness in less than a month (!) Thus, I am now prescribed 60mg, which works beautifully. My problem is, even though Im taking it 2 hours before bed, Im still zonked and forgetful during the day. It seems Ive traded some physical and mental capacity to get relief from the awful pain I was experiencing, but Im still 'newly diagnosed' enough to consider it a blessing to be able to sleep and not experience pain around the clock. Is anyone else similarly medicated, and experiencing the doped up problem during the daytime? I'd be grateful to any who would share their experience. Baz

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Bazfella, please do not think this is a wind up! There is a series of Yoga exercises that are designed to get you 'going' during the day when fatigued. It is meant to counter lack of quality sleep however it may be worth looking into this. Plenty of advice on the Web but personally I'd try to arrange to speak to a trusted and local Yoga Teacher. It may, of course, be of no use working aginst the fall out from a chemical in your body (your drug).

All the best and good luck too. You are half way to wellness matey.

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Thanks Philip. Sorry I took so long in responding mate, just had an unexpectedly broadband-free 2 weeks. Oddly enough, I was speaking to a fellow sufferer at a group and she recommended tai chi or yoga. Im not so bad now, Ive sort of 'acclimatised', still not driving or cycling but Im not locking myself out of the house anymore. (Well not EVERY day, like I was)

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I would just like to share how I was healed from fibromyalgia after being diagnosed when I was in my 20s. I have written it in my blog https://amhalfwaythere.blogspot.com/

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Hello Community, my name is Teresa Shain and I am a 6 -year survivor of Fibromyalgia. After being diagnosed with Fibromyalgia in 2013, I have made it my goal to educate and help healing myself and others from the symptoms and challenges of Fibromyalgia naturally. Derailed by the illness in my own life and career, I am a first -hand supporter in the challenges of starting over after diagnosis. I have made it my goal to provide information, support systems and natural healing techniques to assist in the journey to limiting pain, depression and frustration in dealing with Fibromyalgia, as is the founder of Healing Body. During my challenges in healing and treatment, I accomplished my 200hr Certified Yoga Teacher Credentials in 2013, in Orange County California. Along with yoga, natural healing techniques, lifestyle changes that are sustainable and realistic, and stress relief management I am pleased to announce my first Fibromyalgia Wellness Workshop in Tustin, CA. I know there are quite a few different forums and ideoligies about Fibromyalgia available, but I have literally transformed myself and others from my practices and am living a healthier life than ever before mentally and physically. I have attached my information here for anyone that is looking for a safe, natural and healthy way to take their lives back joyfully and peacefully. You can reach me by phone, email or you can contact Sanctuary Yoga & Wellness for any questions, concerns or to sign up to join us!

 

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The past 8 or so months have been hard. It started with extreme fatigue. I've always had trouble sleeping so I didn't think too much of it at first. I just chalked it up to not sleeping enough. But when I would wake up and not feel rested, no matter how much sleep I had gotten I knew something was off. I have trouble falling asleep, and when I finally am able to, I have trouble staying asleep. I wake up multiple times a night. I have nightmares as well as waking up drenched in sweat most nights. Then about 2 months ago I started getting really bad pain. It started in my knees, feet, and legs. Then progressed to my shoulders, arms, hip, and sometimes my back too. Since the pain started, I have noticed or developed new symptoms each week it seems (sensitivity to loud noises, hair loss, vertigo, and more). These past 2 days I have experienced what I'm told is called Fibro Fog. I have never in my life felt so unlike myself. It's extremely discouraging. I feel like my brain isn't processing things as fast as it normally does. I will forget what I'm about to say, forget why I walked into a room, almost put things where they don't belong, etc. I have gone to the doctor many times in these past 2 months. She believes it to be Fibromyalgia but says it could also be an auto immune disease. I am scheduled to have x-rays and meet with a rheumatologist next week for more tests. Hopefully I'll know soon what is going on with me. I recently have started doing a lot of research on Fibromyalgia, and understand that for some people it takes years to get a real diagnosis! I'm so sorry to hear that some of you (if not most of you...hopefully not all?) have had to wait so long to get a diagnosis. I feel like in just the past 2 months since the pain has started my progression has been very fast.

What was your guys' progression like? Was it slow or just all at once it seemed? And has anyone found anything that really works/helps for fibro fog besides medication? 

Thank you. I hope you all are having a better day today!

Candis 

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Hi, I'm 43 years old.  I have finally got my diagnosis of fibromyalgia which I've been suffering with since I was a child. It's difficult to say what my symptoms actually are as I also have narcolepsy with cataplexy.  So tiredness, brain fog, poor memory and fragmented sleep at night are symptoms of both.  When I was a child, I used to get dull ache in my ankles which would travel up my legs and the same in my wrists, pain travelling up to my elbows.  I started getting migraines when I was 10 years old and since that age have suffered recurring bladder irritation/infection.  By my 20's, the pain had spread to my sacrum and my hips felt like they were giving way and pain would frequently run down the back of my legs to the soles of my feet.  In my 30's I noticed that I had incredibly tender areas on my body which if were poked, would really hurt, this included lumbar region, sacrum, shoulders and neck.  Now in my 40'S, I have widespread painful areas including my scalp.  4 weeks ago my lymph glands came up in my collarbone and groin right side and the pain all down the right side of my body, from head to ankle as well as hot flushes had me convinced I had some bad infection.  My GP could feel my glands were swollen and ordered full bloods, checking everything.  The results came back with no hint of infection or inflammation so I was given diagnosis of fibromyalgia as apparently my flare up was classic symptoms.

 

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I have no diagnoses but I don't think it's a decent goal to get diagnosed. Fibromyalgia basically translates to "has a degree of unexplained pain" nothing we diet already know! It doesn't get at any root cause it just basically says we tested for other thing we couldn't find a cause so here's a label.  Is it diet allergy nerve infection something environmental? No clue? A diagnosis of fibromyalgia just means they hae stopped looking at another cause. It means so little. In terms of treating it at least. It means a lot to people to be acknowledged as having a problem, but it would be a lot better if we could figure out why so many peo

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I loved taking amitriptaline, I slept like the dead, but I had to stop taking them because I felt so groggy was difficult to focus at work and at weekends I just couldn't function was soooo tired. 

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There is nothing on the blog page?