Hi all, its been a while since my first post when I joined MD Junction about 2 months ago. If you would like you can read my story on the joiners page (Introductions & Personal Stories > hello from across the pond).
I am in need of some experienced advice from anyone who can help. As I mentioned in my intro post I have not been diagnosed with fibromyalgia but I had done extensive research on my initial symptoms that arose right after my appendectomy (disturbed sleep patterns, brain-fog, balance & coordination issues, moments of dyslexia ect) and concluded that FMS is probably what my symptoms are pointing to.
My question is this, how long (on average) does it take before one can be sure they have fibro?
From what I have read pain is the key factor of fibro – what confuses me is that I have experienced most of the ‘secondary' symptoms of fibro before feeling any pain and even the pain that I have experienced is quite manageable. 3 months after my first set of symptoms I experienced what I can describe as ‘tendonitis' in my right forearm – this has gotten better over the last 1.5 months but I can still sense some sensitivity esp. when I push my finger down in the middle of my forearm. I am also experiencing some discomfort in my left wrist which reminds me of how my right arm started to feel prior to the case of ‘tendonitis' setting in.
As I have read in many places that FMS is not a deteriorative condition - when can you be sure you have FMS? If its not a deteriorative condition how is it that people report being disabled by it – how long does it usually take before one expects not to be able to live a normal life (go to work, go out with friends ect)?
The official diagnosis for FMS surrounds the occurrence of ‘trigger points' that are suppose to be evident on both the left and right side of the body in no less than 11 out of the standard 18 points – is this what I should be looking for?
Sorry for the big list of questions but there is not a lot of information out there on people's experiences while the condition is still in its early stages – is there anything that can be done in early stages to secure a more ‘subtle' on take of the condition?
Your feedback will be greatly appreciated – again sorry if this post is tooo long.
I also had "tendonitis" when I was 14 and 16. The main thing that the drs do is rule stuff out and do the trigger point thing. Supposedly FM is not progressive, but I have progressed. I began early symptoms at age 6....growing pains, cramps, muscle aches, etc. and it slowly went on and on. I did have some years of remission between pregnancies but as of the last 5 months or so it's gotten bad enough that I'm filing for disability. My son was born almost 2 years ago. It kicked back in and is now quite bad.
Hi Nikos, as far as symptoms go, everyone is different. I have had it for years but didn't start taking pain meds until about 7 years ago. When it first started the pain was definitely there but the fatigue and other symptoms were so much worse. As I have developed other issues the pain has become a very big deal for me and the fatigue is more manageable. It's a changing disease and maybe it in itself doesn't progress, the number of symptoms and the intensity of these symptoms does get worse. It has also been my experience that no one has just fibro. Either you have a number of other auto immune diseases first and then develop fibro or you have fibro first and within time develop a number of auto immune issues. Again each person is so very different but if you read through the posts you will find someone who understands exactly what you are going through.
Post edited by: hopefull1, at: 05/15/2009 04:55 PM
First off I'd like to welcome you, I don't think we have met.
Second, I don't know if the symptoms are different for men and women or not. I do know that there seems to be different levels of fibro. Light cases and more severe cases.
Sleep disturbances, brain-fog, balance & coordination issues, unexplained pain are all apart of fibro. It's really difficult to diagnosis because it memmics so many other things.
You really need a qualified doctor to do tests to elimate other possiblities first. Only then can they really determine that it's fibro. And that would depend on how cooperative your doctor would be. And since a lot of doctor don't believe in fibro in the first place that makes it difficult.
From what I understand, it's only deteriorating because you lose your lifestyle. Most cases people seem to have more than just fibro, and it seem to be brought on after an injury or accident. People have flares, which are times when the pain is at it's worse. Some seem to manage better than others. I am not an expert. I haven't had the diagnosis for very long. I'm sure some one can explain things a lot better than me.
The tender points are how they diagnosis you. Trigger points are Myofascial pain. Which is very simuliar.
Hi nickos, With fibro, there are different degrees of it. I have a very mild case meaning I don't get the severe pain like some do but I do get pain on occasion and I have more than 18 trigger points. Mine also doesn't appear all at the same time. Sometimes it's in my shoulder, then it'll shift and be in my hip. Most of my conditions I've had way before I was diagnosed with fibro so I tend not to link them to the fibro. Although some will disagree, fibro is not degenerative nor it is progressive meaning it won't leave you cripled like Rheumatoid arthrits can or like scoliosis can leave you deformed. It doesn't leave you with the uncontrolled spasms like Parkinson's disease. those conditions I would consider to be progressive and degenerative. Only your Doc can tell you if you have fibro or some other disease so it's always best to get a Rheumy's opinion.
05/15/2009 05:34 PM
Posts: 10865 VIP Member
How can one go from mid to moderate to severe if fibro is not progressive? I understand it does not have the same complications as does RA, Lupus, Parkinsons, etc. But if it is not progressive then why do people well....progress? And their lifesyles can change drastically?
I am a mother of a fibro daughter and her's is mild. I have RA and come her to find out as much about fibro to be able to help her if she progresses. Plus I can relate to alot of the pain and fatigue that is very similiar in both conditions.
Please, I am not trying to offend anyone. The fact is all of you know much more about your illness than I do. I am just trying to become educated about fibro. Maybe there needs to be a thread where folks can describe onset to present of fibro. Including meds, etc.
Many gentle hugs
05/15/2009 05:49 PM
Posts: 1965 VIP Member
Honestly bits I have so many things influence my fibro that it's hard to tell whether the fibro progresses just in itself or if the other problems make it feel worse. As I've aged I have developed more syndromes/diseases and so of course my fibro feels worse but I don't think md's truly know and won't know until they develop an understanding of what causes it. I don't think asking questions is offensive I think it's good, it made me re-evaluate my thoughts. In most cases it isn't degenerative and most people are able to keep some sort of quality of life and basic functions unlike Parkinson's where eventually you totally freeze up. We can continue to "appear" normal to others while being very afflicted. Where many diseases you can't cover up what's going on. Good questions for sure and my heart goes out to your daughter.
05/15/2009 06:02 PM
I have mild to moderate to severe pain with my fibro at times but it goes away to return at another time. Fibro is pain and the pain is what is intensifies but the pain does not convert into other conditiions. My Diabetes on the other hand is progressive. The older one gets, the harder it is to keep it under control which leads to the progression of kidney disease, eye disease, heart disease, diabetic neuropathy etc. Fibro has not progressed into any other major disease as far as I know. Know one knows what causes it so how can one say that it is progressive????
05/15/2009 06:12 PM
Posts: 3383 Senior Member
Nikos, I believe that we have spoken before but I would like to welcome you again. For me, I hurt for quite a while thinking that it was all from my back and then I started getting extreme fatigue, I passed this off as effects from the meds. It continued to go on and get worse and then I went to the md for what I described as flu like symptoms, I hurt in all my joints, I was tired and just plain did not feel good. She mentioned at that time that it was possible and then when it did not go way she sent me to a rheumy who dx me with it. In the books that i have read, they say that you are in pain for 3 months with the pain but I have seen in it say 6 months to a year in a few books, I would ask your md and tell him that you think you may you have it that you have been reading up on it. Also, as others have mentioned, there are many conditions that have similar or overlapping symptoms. Good luck, please stay in touch and let us know what you find out. Either way, it is no fun to be in so much pain and we will be glad to help you through it.
05/16/2009 02:25 AM
Posts: 4 Member
Thank you all for your quick responses – I have read how people say this forum is a great place to be and know I can see why This is quite a long reply so I have underlined my questions and bold the important stuff for quick reading.
As I have mentioned in my intro post all my symptoms appeared right after my appendectomy. Until that point I was 100% - I can't say that I suffer from any other ailments and there is no history of fibro in my immediate family – my gran did suffer from arthritis and Alzheimers but I am not sure if that is really relative.
I share bits's suggestion on having a thread where people who have been living with fibro can write about onset to present of fibro. I have read varying posts which describe living with fibro for many years (in some cases it starts in early childhood) and only managing to get it diagnosed after numerous years – then there is other cases where people mention how they wake up one day with intense pain in multiple areas – these varying stories make it difficult for a person like myself to determine how thing might turn out for myself.
All I know is that since my appendectomy in December 08 I cannot seem to return to 100%. My initial symptoms can all by classified as ‘secondary' symptoms of fibro – and the weird thing is that for a period of 3 months other than slight discomfort in the area of my waist / back there was no other sign of pain – just a barrage of ‘secondary' symptoms like:
- increased stressed / panic (primarily due to the fact that my brain kept telling me something is wrong)
- major sleep disturbances
- balance / coordination issues
- inability to multitask
- moments of brainfog…
but again very little pain and even up to today where pain has been introduced into the picture (but is still very manageable and only present in a couple of areas) I am still living my life just as normal – I would like to know more specific information on the kind of timeframes it takes for FMS to ‘develop'.
As I am sure you can all appreciate, once I experienced all these symptoms I immediately thought something went bad with the appendectomy. I ran loads of blood tests, did and MRI (to rule out MS) and visited 2 of the top neurologists in Greece – I expressed my concerns about Fibro but both seemed very quick to rule it out. I was prescribed anti-depressants (variants of American Prozac) and was told with time things will get better.
I took them for a period of 3 weeks and saw my symptoms continue to change and my sleep patterns took a major turn for the worse – I could not sleep for more than 3 hours at a time and the next day I felt like death. I decided to stop the anti-depressants and decided to see a Homoeopath in late March. He too did not seem to feel that I am suffering from FMS – he explained that my body has gone into shock from the surgery and that my symptoms are mimicking fibro. I decided to go ahead with the Homeopath's therapy and coupled it supplements which I had read are helping fibro patients (mostly a cocktail of vitamins C,D zinc and calcium, B12 and omega 3). I saw instant improvements in my sleep patterns for the last 1.5 months I am sleeping like normal – my mood is much better and I can say that I have experienced a general improvement of about 70% in my secondary symptoms however now I am experiencing pain/discomfort in numerous places – primarily around the ankles and feet, top of my knees and on the side of my bum (mainly apparent in the right side).
I have read great things about how alternative medicine is helping people with fibro and right now I seem to feel it is helping me too – however again I am not sure is fibro is responsible for how my body has been acting over the last 5 months. I am seriously considering going to a rheumy here in Athens who I believe is quite familiar with FMS just to get his opinion. Because the population of Greece is fractional to that of the US there are not that many documented cases of FMS – so being able to come in touch with people who suffer to get their insight is an additional problem. I am hoping that my condition will at some point stabilize so that I know what I am dealing with.If it does turn out to be fibro – how long before it start to change my life – like not enabling me to drive or do work?
My apologies once again for the long post – I am just finding it hard to understand what it that is happening to my body and at the same time I don't want to sound like a paranoid hypochondriac because I can appreciate that I am still able to go on with my day-to-day life as ‘normal'.
Looking forward to reading your comments and answers – much love / strength to you all.
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