My GP says he's pretty sure I have fibromyalgia after going back and forth to him with different symptoms for almost a year. I now have an appointment at the hospital in early December with a rheumatologist to discuss the symptoms further, have a full examination and hopefully receive a diagnosis.
Over the last few months my symptoms have gotten worse and more diverse and I can barely stand it anymore. I constantly feel tired no matter how much sleep I get and the minute I do anything like make a meal or go shopping I feel exhausted and have to rest. I get what my doctor says is tension headaches all the time and feel as though I am allergic to everything! My nose, ears and throat constantly itch (sometimes unbearably) and and I'm always sneezing. I always feel as though I am about to get a sore throat and ear ache and then it goes away. I have chest pains that feel like I'm having a heart attack and I get stabbing pains that feel as though they are underneath my ribs. My back constantly aches but when I try to sit or lye comfortably I get stabbing pains and can barely sleep in the early hours. My ankles feel as though they are sprained even though I haven't done anything to them. I bruise so easily and the slightest touch feels so painful. Even running a finger over my skin sometimes feels as though I have sunburn or something similar. My arms and hands and legs and feet go numb all the time and sometimes I get what feels like hot pin pricks in them. When I walk sometimes or am lay down I get shooting pains down my legs. My Doctor says I have IBS and I spend all my time either constipated or with diarrhea and horrible stomach cramps.
I feel like I am going insane and I can't cope. I'm quite sure I sound like a hypochondriac but I really do experience these symptoms on a daily basis. Am I alone in this or do other people with Fibromyalgia have these troubles?
I am on anti inflammatory tablets(pregabalin after gabapentin wasn't working) but they barely do anything. How can I live like this for the rest of my life?
I have had many blood tests to rule out any other defficiences etc.
No you are not going insane, it is all part of fibromyalgia, contact me if you want further help I have been a sufferer since 1996 tried everything, and have a wealth of information. even if it is not fibromyalgia I can give you advice on how to control your pain instead of it controlling you. I do have to tell you though that anti inflammatories are of no use to fibromyalgia as no inflammation is involved. The best analgesic is nefopam (acupan) and paracetamol both of which you can have on prescription from your GP ( you can be prescribed a larger amount of paracetamol ie month supply if paracetamol as you can only purchase 2 small packs from stores) I am also a retired general nurse ( in fact retired twice for ill health) I hope this has been of help to you
Emis Moderator comment: I have removed the email address as we do not publish these. If users wish to exchanges these details or contact each other directly please use the private message facility.
Thank you for answering my post. Why has the doctor prescribed me anti inflammatories? No wonder they aren't working for me. It is horrible living with this and I am desperate for my app with the rheumatologist next week just to get some answers because right now whenever I try to explain to anyone what's wrong with me I get the awful feeling they think I'm jut lazy or some sort of hypochondriac.
I am glad to hear my symptoms sound familiar to you because others I have tried to get advice from have told me these symptoms are nothing to do with fibromyalgia an yet others have said they are so it is quite confusing.
I really relate to what you're saying here. In some ways the worst thing about Fibromyalgia is the vast variety of symptoms. It kind of helps to realise it is a syndrome and therefore frustrating to get advice or treatment as you tend to need input from many different specialists none of whom are relating their 'take' on it to each other.
This article gives a fairly simple overview and is a good starting point for diet management:
http://uk.lifestyle.yahoo.com/live-fibromyalgia-m-e-144500828.html
Self help and a holistic approach helped me make real improvements and gain some quality of life back. Also knowing how to recognise what's happening especially during severe flares and actually 'do' something about it is so much better than feeling overwhelmed and helpless.
Thank you I will read through that info. I am really glad to be able to hear from people who understand.
http://chronicfatigue.about.com/od/managingyoursymptoms/a/fibroclothes.htm. This is this best information and advice you will read anywhere, with weekly updates. Using this website has helped me tremendously. One word of caution read a little section each day or it can be overwhelming, I love the advice about clothing applied what I have learnt, changed items of clothing slowly, what a difference. Hope you find it as useful as I have. Hope you have a better day soon ! Xx
I have looked at the yahoo link for fibro, the information is incorrect, no inflammation is involved, it is a a problem with the brain and central nervous system, many many research documents to prove this, scans etc also I wonder if this person had their inflammation levels checked by GP . Nowhere does this article quote any doctor input or research or where their information came from..
I thought you all with fibro might be interested in this article latest research http://onthewight.com/2013/11/29/exciting-news-islanders-fibromyalgia/
I have to disagree somewhat with Julie. The entire syndrome is multi faceted and sufferers will experience variable symptoms. I personally have inflammatory pain related problems which anti inflammatory medication did help but the side effects were hideous. Realising that stress is a trigger ( as with any illness) and supporting the immune system makes sense too. I now take no medication at all but I listened to my body and noticed I was less inclined to eat some foods than before. When I came across that kind of anti inflammation diet guess what? Many were on the list.
Ultimately we are all individual in our manifestation of the illness and it is extremely complex.
Certainly some major trauma happens to most sufferers I believe which triggers a drastic change in our pain sensitivity levels.
Chemical imbalance is cited as a factor and there's some fairly unexplored research going on into a notion that we are carrying a viral infection inside the cells so the immune system is constantly fired up trying to eliminate something which can't be dealt with.
My life was destroyed and I was paralysed with pain in a wheelchair. I too took a path of healing, diet and ditched as much stress inducing factors as I could. I wouldn't say I'll ever be 100% again but I can dance, take long walks and do all sorts of things I thought I'd never do again. I still have relapses and need to sleep a lot when I get so much as a cold and my muscles and feet stiffen up and hurt. Any kind of virus or infection brings major symptoms back but oh boy is my life so much better than it used to be.
Thank you 'alphavita'. I realise a lot of research on my part is needed to try and understand this illness and the different ways I can deal with it. I am glad to hear you have regained some quality of life back and i hope to do the same at some point in the future. Thanks for sharing xx
Princessemh89 when my last post is approved for the link you will have all the latest info and help you could ever want. How to cope, how to explain and talk to your GP, etc all the information is gathered into one easy place. All the information can be be verified and linked to research, which is the safest way of self help. I do agree that diet and supplements help especially omega 3, b12, magnesium maleate, vitamin c. Also whaet can cause a huge problem. I also agree that aspartame causes damage. What also helps is tonic water for restless legs. My best friend is my hot water bottle, forget wheat bags they do not hold the heat like a hot water bottle. I use it on my most painful spots of the day. Fibromyalgia is an illness of endurance and personal determination. First I went through denial, I couldn't accept this was happening to me, then I grieved for the life I once had, then acceptance not resignation, acceptance because I had to alter my life control the pain and not let it control me. I hope you feel better soon and take each day as it comes , learning new coping strategies in little steps so that you are mot overwhelmed, enjoy reading and learning and I hope you get along well xx
I will ignore that last reply about cannabis!
Thank you julie477knitnatter. I will definitely investigate all the info people have put before me.
I have deleted the post about cannabis and deactivated that user.
Regards,
Alan
Emis Moderator
Julie: Thanks for those links.
I've seen the info on the first link before but the news that some proper research is going ahead in UK at last is really encouraging and I must say the comments post in that link by Mel is a superb piece of summing up of what we all have to deal with regarding other people's perceptions of us.
Princess. I'm glad my input has helped a little. I am a writer so when Yahoo asked me to write about Fibro' I jumped at it because when I was hit by this condition I didn't see how I could ever have a life again. The fear alone is overwhelming.
At that time the only people posting anything much about it were entirely negative. I don't think I found a single success story and I was desperate to know if anyone had made a reasonable recovery. I have and took the opportunity to get that out there.
People often don't realise writers never get a free hand to write for publication which is frustrating sometimes, especially when you'd like to cover more aspects. We are limited to a strict word count and have to be very careful about the legal aspects of giving any advice or making claims.
The only way I was allowed to write the piece was from an entirely personal perspective ( which it is) in 650 words maximum ( I could write a novel on the subject trust me) and I was directed firmly to keep it pink and fluffy ( rolls eyes) which was a tall order.
Julie is spot on that the piece is a brief overview with no science based research links ( word count restriction) but hopefully it could help some sufferers find a way forward by pointing them in the right direction.
Just a quick comment regarding the deleted post: I didn't see it and if it really was advising using the drug I'd say that would be the last thing we need!
However they 'may' have been talking about Hemp oil which is sometimes mistakenly called Cannabis oil which is in fact a perfume ingredient and totally synthetic, merely a smell. Then going by the same name, there's the real extract from the plant which is of course illegal. People can and do get muddled between the three.
Hemp oil is a harmless organic health supplement with high useful levels of Omega 3. Nothing bad about that but it's not cheap. I stick with fish oils myself.
Hello,
I have had "FIBROMY"for over 6/7 years.And I don't think anything is off limits with this condition,some days rare a lot worse than others.When I feel completely "GOOD" I get worried if I am normal,smiles.
I just finish a 2/month bout with my knees and not sure if it was related or just age related.
My best remedy I find is EPSOM SALT baths,and creams I fine and others offer me to try.
For your questions,I have had them all in one one way or another and you should keep your appt. to get
relief for what you are dealing with-new products may be avali.I don't like taking meds for mine I rely on me
until it gets unbearable(as it sometimes does)and my oils,baths etc...........
Epsom salt is magnesium, but Himalayan pink salt contains more magnesium and other trace elements that help, it is available from west lab, I buy mine off the Internet a whole sack at a time, 250 mg in a bath of body temp water for no longer than 20 minutes, i3 times a week before bed.
Well today was my rheumatology appt and after a long discussion going over my symptoms and some painful prodding and poking he told me there is no doubt about it, I definitely have fibromyalgia! Surprise surprise. Although I am grateful to have a diagnosis because I know for some people it is very difficult to get one. So now I have to wait for my doctor to receive word and then I have been instructed to go see him and get to amitriptyline. Anyone have any experience with that?? He wants me on it to get me into a better sleep cycle....
I'm glad you finally have diagnosis, now you can move forward, Personally I don't like it. My sister takes gabapentin. I was prescribed nefopam and clonazepam by the late prof davies ( he wasrheumatologist from guys hospital London,, expert in fibromyalgia sadly he passed away in May) I also take paracetamol. You can only try it and see if it works for you
Hello,
Happy to hear you have a diagnosis,as well.Living with Fibromy.is a lot easier than living with other diseases.
Its kinda like you know what to do,how long to do and when to do things according to your "body"that will talk
to you for what is bothering you the most on any given day-time.
I look forward mostly to know attacks in one area or another- you must monitor Computer Use,if not a day or 2
later you will wonder why your arms/elbows hurt etc....