Non-progressive, what a joke!

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Non-progressive, what a joke!

Postby Queenie_70 » Thu May 08, 2014 3:31 pm

I don't want to sound angry, but I really am. I keep getting quoted "research" that shows FM patients have a non-progressive condition. It isn't even called a disease. Anyway, from 10, maybe 11 years ago from when I had pain in my joints, I now have a total of 73 conditions, 74 if you count brain lesions, just to be told that most of it is in my head. I am brought to tears, literally, when I hear this. I cry out for people to believe me when I say, I walk into a room and it is not forgetting why I went in there, it is forgetting what is in there. Kitchen is a great example, walking in there and I don't know where my coffee mugs are stored even thought they have been in the same cupboard since I moved house. Disorientation, pain, dizziness, inability to talk, think even some days, the list is almost endless. My own research indicates MS as a background condition to my FM, but I doubt I would be taken seriously as I am now 43. What does one do? I am a full-time carer for my daughter, I have to quit my business because I just cannot run it anymore, bills still have to be paid, and I am getting worse, literally, month by month.

Frustrated, sad, and battling alone. I finally told a really good friend, it helped, but it is such a mis-understood diagnosis, that the internet does not give it the justice that it deserves. Going back to, non-progressive illness.
"Life is not measured by the breaths we take, but by the moments that take our breath away."
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Re: Non-progressive, what a joke!

Postby Theresa34 » Thu May 08, 2014 7:23 pm

How do you mean you have 73 conditions??? :shock:
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Non-progressive, what a joke!

Postby Queenie_70 » Thu May 08, 2014 7:36 pm

Sorry, was stoned on morphine when I wrote that...I have 73 "symptoms" and growing...many apologize for the error in wording.
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Re: Non-progressive, what a joke!

Postby Theresa34 » Thu May 08, 2014 9:13 pm

No worries. I was quite shocked! Lol
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Non-progressive, what a joke!

Postby gazmo87 » Fri May 09, 2014 1:08 am

I'm in the same boat as you my friend, symptoms have grown over the years, but also certain symptoms disappear, I tend to agree that fibro is not progressive and I'll explain why, a progressive illness, let's use for instance cancer, goes through transitions which will never improve. Fibro however is more of a random mish mash of symptoms that can come and go as they please. I'm not saying symptoms don't get worse, but they change in severity, for instance back pain can be real bad 1 day, followed by not so bad the next day. An example I can use is I went through a huge period of acid reflux due to fibro which got so bad that I was spitting blood, this lasted months and months, now I barely even get acidic problems and instead I get IBS more. So to sum up its not progressive, it's random, things can get better and things can get worse depending on how our fibro decides to be on the day. Best wishes, gaz
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Re: Non-progressive, what a joke!

Postby painprincess1 » Fri May 09, 2014 10:16 am

I've been banging on my dr door trying to get to see a Nero about ms .im 41.what make s me mad is they never even tested me for anything other then fibro. Apart from endless blood tests.
Now I'm not saying I have ms but I'm not saying I don't .the two mimic so well I can't understand why they don't look for that the minute they start looking for fibro.
Some ppl on here see a Nero once. Year live seen him onces .
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Re: Non-progressive, what a joke!

Postby Queenie_70 » Sat May 10, 2014 10:26 am

Thank you all for your insight and willingness to share. I guess I was having a particularly bad day when I posted that. I am upping my tramadol almost on a daily basis, though never over the recommended dose, but what do you do, when a morphine derivative is no longer useful. My pain went from annoying a few years ago, to debilitating?

I too have wondered about MS, I am most concerned about my directionality, losing balance, and memory. I am not talking about losing a few words because I am 43 and c**p happens when you get older, I am talking about every sentence I have to be reminded of a word I am looking for. Every single one! It is frightening!

Our united courage and bravery should be shouted to the stars, but we are still silent sufferers. I really hope that the gazmo87 gets to see the specialist she needs, and that we all have a chance to life, love and celebrate life. I just personally know I am going downhill fast. My daughter, whom I care for full time, has had to take over the role of adult as most days I can't. I am frustrated with the condition, and with my slow, but sure journey to yucky things! xxx
Last edited by denys on Sat May 10, 2014 6:04 pm, edited 1 time in total.
Reason: removal of expletive that may have caused offense
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Re: Non-progressive, what a joke!

Postby Queenie_70 » Mon May 12, 2014 10:19 am

*UPDATE* A woman that I know through work is a GP. We were chatting and I told her of what was happening with my body and mind. Her knee jerk reaction as soon as I told her was "MS." So, now that she said that, do I ask my GP for testing? Do I wait for him to come to his own conclusion? Treating the symptoms seems to be the only thing out there for FM and MS, so will a name make a difference. As I am currently looking into ESA, would it be wise to get tested, even if I do not have the "markers?" Confused a little:)

By the way, my last post was edited for an offensive word, and I wish to apologize. It is pure emotion that is poured out on these posts, and I possibly got a little carried away. I will endeavor to not let that happen again. Thank you for not excluding me for this infraction. The board is the best one I have come across yet, and to loose all of your collective knowledge would be heartbreaking for me.

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Re: Non-progressive, what a joke!

Postby FluppyPuffy » Mon May 12, 2014 12:44 pm

Queenie, hopefully I can assure you that there wouldn't have been too many problems had your post been left unedited. If it's the word I think it is, then it doesn't tend to be the sort that causes upset like others can, and do. If something seems likely to cause any sort of problem, then whichever of us comes across it first when going thru the posts, we tend to replace it with one of the many smilies we have that can be used in such a way. If you think there may be something that might cause any concern when you are posting, you could try using them, they do an excellent job of still putting over what you want to say without losing the feeling and emotion you may be dealing with at that moment :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

Wrt to FM being regarded an non~progressive, the medical fraternity regard it in this way because, unlike conditions that cause damage and problems with joints, bones etc, such as Arthritis, FM doesn't do this to us. However, when you look at what people have posted over periods of time on here, with what they say and how it seems to be said, there is an awful lot of anecdotal evidence which shows that FM has changed in various ways for pretty much everyone, and sadly these changes seem to be more towards the getting worse end of the scale rather than the improving end :( :( :( :( :(

If you feel that there may be something else at work, either with, or instead of FM, it is something that you need to raise with your GP. If not, and it keeps whirling round and prodding you to remind you that it is still nameless and there, it will start to really wear you down, which is never a good thing for anyone, either with or without FM in the mix.

Before seeing your GP about this, it might be worth keeping a symptom diary for a while. With details being recorded daily it can help create that overall picture of what days can be like for you when something happens, you need to go somewhere/to see someone etc. It can also help with spotting patterns in how something may occur, just how much difference there is when a similar problem appears at various times and affects you, as well as a host of other possibilities. Having as much info and details as possible to support you is always helpful.
Last edited by FluppyPuffy on Wed May 14, 2014 8:10 am, edited 1 time in total.
Reason: Changed to use the correct tense.
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Re: Non-progressive, what a joke!

Postby Queenie_70 » Tue May 13, 2014 9:35 pm

FluppyPuffy,

Thank you for the words of wisdom and encouragement. It is so hard to get a GP to understand sometimes what we go through.. UGG! I am interested in how you explain non-progressive, as it makes sense. No my joints are not deteriorating, but my pain is increasing.

I have just been told to test for MS, and so I will go through the motions and see what they have to say at the end of the rainbow. My problem this week has been that I have had tremors turn to uncontrollable shakes, memory loss, vision disturbances, muscle spasms that were so violent I couldn't talk as my jaw was clenched shut, inability to walk, dizzy spells, nausea, and sudden weight loss. Now, the weight loss I can live with, the rest are driving me crazy. Spoke to the doctor today and he told me that I needed to see a psychiatrist??? Explain that little nugget of gold....

I feel like if I am told that it is all in my head, or that I am nuts, or fobbed off one more time........grrrrr

I don't know whether I mentioned this, but I have been signed off work for six months. Called ESA, but who knows how long that could take. Might have to move back with my mother, at the age of 43, with a disabled daughter that needs 24 hour care...yeah she needs that headache. Had to have my dad talk to the lady as I couldn't , but she was cool with what he said, I was on speaker, so I heard all the questions at least. I am now on Tramadol, and a sedative, sleepy is an understatement. :)

To appreciate my body when it was pain free, I so wish I had! x
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Re: Non-progressive, what a joke!

Postby denys » Wed May 14, 2014 10:00 am

Queenie you wouldnt have been excluded for the use of that word, its just that some members dont like to see its use so when its spotted we just replace it with ***** dont worry we can all get so frustrated that far worse will be used :-D :-D :-D :-D :-D :-D :-D I really hope you dont have MS so good luck with all the testing please let us know how you get on :hugs: :hugs: :hugs: :hugs:
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