Please help me.

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Please help me.

Postby Sunflower7 » Wed Jan 29, 2014 3:37 pm

Hi There,
Thank you for letting me join. I have had CFS for about 17 years and an underactive thyroid for about 8 years. My symptoms have changed this year and I was referred to a rhematologist who said I had fibro. I will list my symptoms and please can anyone tell me if it sounds like fibro.

1. Stiffness all over in morning.
2. Lower back pain.
3. Bladder issues ( small leaks and periods when I feel like I always need to go)
4. IBS and heartburn. (Feel stuck when I eat sometimes)
5. Itchy skin all over since November (worse in evening and when I'm hot)
6. Dry eyes and mouth.
7. Heart palpitations
8. Horizontal ridges on nails.
9. Hands and feet always cold (not sure if it's reynaulds?)
10. Brain goes foggy.
11. Calfs go stiff and cramps
12. Abdominal ache sometimes.


I have slightly raIsed IGG and IGA immunoglobins
My plasma viscosity ( inflammation marker is always a bit raised)
I had 2 positive ANAs which went negative again.

Does this sound like FIbro? I'm so scared and finding it difficult to cope. I'm married with a 2 year old and struggling everyday with anxiety and worry.

Thanks for reading this far.
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Re: Please help me.

Postby FluppyPuffy » Wed Jan 29, 2014 4:14 pm

:welcome: to our little bit of cyber haven Sunflower :cow-wave: :cow-wave: :cow-wave:

I hope you'll appreciate that we can't say whether the rheumy gave you the right dx, or give you a second opinion, as non of us here are qualified to do so. All we can really do is make generalised comments on what you have said. To query your dx or see about a second opinion, you will need to go back and see your GP.

With you already being dx'd with CFS, hopefully you'll be aware that there are an awful lot of symptoms shared between FM and CFS, which gives rise to some of the confusion often experienced when trying to get those answers that you're desperately looking for.

I have both FM and CFS, and the list of symptoms and problems you have listed are very similar to the ones I experience each day. Do you have pain or fatigue as a more prominent problem, or do you find that it can be either vying for prominence??

From what I can recall about blood test results, (both mine and what others have posted about theirs) whilst there is currently no widely~available blood test that detects anything related to FM, it isn't that unusual to find that blood tests have similar results to those you've mentioned. With FM being so vague, there isn't an absolutely definitive answer as to why these kinds of results are present in some tests, whereas in others nothing at all shows up.

I can understand why this is making you feel so worried, as I've said tho, for the additional clarification you're wanting, seeing your GP may well be the best option for you.

Wrt the areas where you are finding things a struggle, if you can give us some ideas which are the worst ones for you, we might be able to come up with some suggestions that you could try out.
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Re: Please help me.

Postby Sunflower7 » Wed Jan 29, 2014 4:31 pm

Hi There,
I posted in the other forum too as wasn't sure where to post so sorry. Thanks for your help. I'm struggling as every symptom I feel is something sinister. I have bad health anxiety too. Is it normal for symptoms to change over the years? I used to get more flu like feelings than pain and that's how I got the CFS diagnosis all those years ago. It started with a virus I got and didn't fully recover. These symptoms I have listed are all quite new for me so it makes me scared something else is going on. Everywhere always says blood tests are normal in fibro so it worries me that some of mine arnt. The itching has started since going to the rhematologist. Thanks again for listening.
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Re: Please help me.

Postby FluppyPuffy » Wed Jan 29, 2014 5:22 pm

It looks like the Gremlins have eaten a chunk off my post :facepalm: :facepalm: :facepalm: Makes a change as they usually pinch the whole thing :lol: :lol: :lol: :lol: It was the bit that explained that I was moving you over into "Where To Say Hello" with it being your intro post as it was a more suitable board.

Symptoms and problems can change over time, and new things can appear, which can lead to additional conditions being dx'd. This was what happened to me and led to the CFS dx (as well as Type 2 Diabetes.) My levels of fatigue were increasing, along with the coldy/fluey feelings, and I developed a really deep and heavy aching which always came along with the fatigue increasing. And since CFS has been on the scene, I've also noticed a bit of a change wrt FM.

Prior to CFS I didn't have the typical flare~up behaviour that is associated with FM. The pain was with me constantly, as it still is now, but instead of increasing with a flare~up, then slowing settling back down, it would increase and then stay at this new level until the next spike in things came along, and I'd go thru the same thing again with the increased level then becoming my accepted/"normal" level. Since the CFS dx tho, I've been experiencing slightly more typical flare~up behaviour with pain levels increasing, but then gradually reducing back down, altho not all the way back down to where they were pre~flare.

Have you been shown/attended any sessions to help with managing CFS since it was dx'd?? If you have, a lot of the techniques used to help manage CFS are also used in managing FM, such as pacing & resting, finding your new capabilities and limits, gradually building up stamina etc. If you haven't been on anything like that, it might be worth asking your GP whether there is something along these lines available in your area. These types of programs go thru the various things that can help and give you a set of tools to help manage things and make yourself a little more settled about things. And doing things like this can also help calm your anxieties as you have a better idea of what is happening and why, as well as being equipped to deal with and get thru the times when it feels like your body is just screaming at you at full volume.

Blood tests do tend to come back normal when looking at them in relation to FM. However, it's not that unusual to find that some results may be raised a little. These slight increases may be caused by a number of things, such as your body fighting off some sort of infection or if you have had some sort of bump/injury, but as I said in other post, so far there isn't a definite explanation as to why this could happen so far.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Please help me.

Postby Sunflower7 » Wed Jan 29, 2014 5:41 pm

Thanks for your help, I have been to a couple of groups a few years ago that I was referred to that helped me at the time. I am waiting on some CBT sessions to help me cope but have been waiting for ages! Do you think that when new symptoms appear then that means a different diagnosis or possibly just different fibro symptoms? Sorry for all the questions. I feel more or less the same everyday in regards to pain/ fatigue rather than feeling normal then relapsing if you see what I mean although I do feel bad when really overdoing things.
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Re: Please help me.

Postby FluppyPuffy » Wed Jan 29, 2014 5:57 pm

The appearance of new symptoms can be due to either a different problem/condition developing/at work, or because it is FM~related. When anyone mentions that they have had a new symptom appear, or that something has changed, we always suggest that they go and have it checked out with their GP to try and find out what is happening and why.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Please help me.

Postby Sunflower7 » Wed Jan 29, 2014 6:13 pm

Thanks again for all your help
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Re: Please help me.

Postby denys » Wed Jan 29, 2014 9:14 pm

Hi and :welcome: I have nothing to add to what Fluppypuffy has already said so will just :cow-wave: :cow-wave:
Denys

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Re: Please help me.

Postby Sunflower7 » Wed Jan 29, 2014 11:07 pm

Thanks x
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