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New here

Postby Charlie276 » Sun Dec 07, 2014 7:16 pm

Hi everyone,

I'm new here and I signed up a while ago but have never posted as i don't have Dr diagnosis of fibro. I think in the 16th I will get it though as I know my rheumy blood tests came back negative for the 2nd time in a row so he said his next thing will be a pain syndrome. I'm just waiting to see gp as for some reason receptionist wouldbt give me details over the phone.

I'm 30 and was 25 after having my son when weird stuff started happening and hurting, brain fog and fatigue and slowly the pain has crept all over but the worst is my neck, face, jaw, shoulders, ribs and then more bearable is everywhere else.

I've tried various pain killers over the years and nothing works. The only thing that helps is a diazepam which helps not when I take it but the day after. Day 3 is unfortunately like a rebound and things get much more painful and I get very weepy from the agony.

This is destroying my life however strangely the one thing I do not have is any depression. I feel mostly happy apart from grouchy from pain and a little breakdown when I've had sever oain for 3-4 days and I can't take it anymore.

I have some questions and really need some advice before seeing the gp as I've waited 2 months for an appointment for him to read me a bloody letter. Perhaps not having to wait 6months I between appointments for things my pain could have been dealt with 5 yrs ago.

So my questions are:
1) cymbalta, Wellbutrin, savella, 5htp. Has anyone tried them and did they help?
2) if I don't suffer depression will any of the above anti d make me depressed (tried topomamx and wanted to mill myself by week1, also tried lyrica which only helped with burning but not aching and hurting plus made me very drunk, gave me restless legs and palpitations 195 bpm.
3) any specific excercusr that helps, I stetch 24/7 cause I can't sit still with the pain and my muscles seem to tighten in response

I'm worried mostly about the drugs effecting my mental health, my son is my world and to think I would become numb to him or snappy or take risks that would harm him wouldbt make any pain relief worth it. I've just read some horror stories about people changing.

I hope I posted in the right place and I don't have Facebook so will I be able to check for responses still?

Also does anyone live in the west Sussex area?

Any advice or personal experiences would be greatly appreciated


Thanks Charlie x
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Re: New here

Postby Duirra » Sun Dec 07, 2014 8:02 pm

Hi and welcome to forum. :welcome:

If you don't suffer from depression I can't imagine why you'd be put on anti-depressants. They can indeed cause depression like symptoms along with a whole slew of other possible side effects. Is there a reason why you're looking to take anti-depressants? Both Cymbalta and Wellbutrin are anti-depressants. Don't know about the other ones.

I have been on Wellbutrin, many years ago. Oddly, it gave me terrible hic-ups all the time. That's not even listed as a potential side-effect. Doctors decided that since I had fibro I must be depressed, despite my telling them otherwise. Eventually, I came across a doctor who agreed with me! Phew! No more anti'depressants and I can go about my business being my more or less cheerful self.

If your problem is tightening muscles due stretching them, it would seem to me you need to find some exercise to tighten the muscles up again. When I first got my fibro diagnosis getting into some sort of exercise program was at the top of the list of things to do for myself. I joined a martial arts class and it really helped keep my strength up. Plus, I now have nifty skills! :mrgreen:
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Re: New here

Postby Charlie276 » Sun Dec 07, 2014 8:50 pm

Hi Duirra,

I really don't want anti depressants or any meds but I've read a lot about those meds being good for chronic pain cymbalta I think is fda approved for the treatment of fibro.

I'm just desperate really, I can't live like this any longer, But I don't want new problens like depression.

I've tried the odd bit of exercise but just hoovering makes me feel like I'm dying the day after or shortly after. I'd love to be able to exercise consistently but I'm scared or the pain after and sometimes when I have it makes things worse. physical therapy just left me in more pain and there is no support when that happens. Strange things is I can sometimes have a couple of days where I'm fine, 92% feeling normal and I think I'm magically healed and then boom next day I'll be worse.

Do you take any meds?

I've tried lyrica and amytriptlyn, the latter made me feel worse.

I just want to be prepared with my options before I see Dr who will no doubt be a douche as they all seem to be.

I've also tried magnesium, b vits, vit d, chiropractor, massage etc but nothing works long term.

I was considering going gluten free but drs seem to think no point without ceoliac disease.
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Re: New here

Postby Duirra » Mon Dec 08, 2014 12:47 pm

I do take meds and have taken a wide variety over the years. Pain meds have never made a difference for me. However, I have taken meds to help me sleep for many years and I finally don't feel like I need to take them any more. I've been off of them for a few months and I'm feeling just fine. At this point I take a multi-vitamin every day. The only medication I am taking is Guaifenesin and there are no side-effects at all.

My sister (who also has fibro) went gluten free years ago and it helped a lot. I also have an aunt who went gluten free (we suspect she has fibro though she says it's only "rhuematisms") and that helped her with her pain, too. Just this spring my sister went to get herself tested for gluten intolerance (she had never gotten tested and she had just tried it on the off chance she was) and the doctor told her that he'd be happy to test her, but that gulten had been shown to cause selling in the intestines. That this could result in gas or pain. For my aunt, it seemed to clear up the pain in her hands.

I can't imagine going gluten free, but Guaifenesin has been working for me. It's a matter of trying different things, seeing different doctors, and finding ideas of what has worked for other people and what might work for you.

I might also add, that generally speaking, when people say anti-depressants help with pain, it's with the belief that the pain is caused by depression. That might even be true in people who suffer from depression. For example, my mother (who, yes, also has fibro) she has clinical depression and they anti-depressants do seem to make a small difference.


But, any discussion on what to do is a bit premature without a diagnosis. Your pain might be something else entirely and there might be meds to help once the doctor knows what the problem is.
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Re: New here

Postby Charlie276 » Mon Dec 08, 2014 2:22 pm

Hi Duirra,

Thanks again for coming back to me,please could you tell me where do you get your Guaifenesin from and do you also avoid all salicylates or just take the Guaifenesin? Ive looked at Guaifenesin before but it doesnt seem like its easy to get over here, in america they have mucinex but cant seem to find anything like that here, not without other things such as paracetamol and caffeine anyway.

I will try the Gluten free thing for a couple of months and see if it makes any difference.

Ive been tested again and again for any inflammatory markers and seen so many unhelpful drs aswell as steroid injections etc and apart from my 1 knee which was swollen for a long time i dont have any swelling or redness, just very stiff. The rheumatologist originally on seeing my knee thought i had RA, then UCTD but then last time he thought it must be a pain syndrome as bloods were good. Just waiting for GP to tell me that.
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Re: New here

Postby Duirra » Mon Dec 08, 2014 7:31 pm

I moved to Scotland just this summer and I have an appointment with my doctor next week to see if I can get my hands on a fresh supply of Guaifenesin. If not, I'll have to order it from the States, which is where I was getting it.

It's not particularly easy to get there, either as Mucinex is not a good alternative. However, the pharmacy where I get it ships all over the world. So if I can't get it here, I'll just order some online.

I do indeed avoid all salicylates and it can be something of a pain, especially when you first start out. Once you know what products you're buying, though, it's just as easy as anything else. It's very important to avoid them on the Guai. The salicylates act as a blocker and pain increases. I always know within a week or two if I'm using a product that is blocking me. While starting on it can increase pain for a time, you eventually get a lot better. The goal with the Guai is to push the fibro into remission. It's not treating the symptoms.

If you try going gluten free, you should know between one week to a month if it's making a difference for you. I hope that whatever you try next helps.
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Re: New here

Postby Charlie276 » Mon Dec 08, 2014 7:54 pm

Thank you for the help x
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Re: New here

Postby FluppyPuffy » Mon Dec 08, 2014 9:56 pm

:welcome: to our little FibroFamily Charlie :cow-wave: :cow-wave: :cow-wave:

Sorry to hear what you're going thru in trying to get some answers as to what is behind your symptoms and problems, being stuck in LimboLand is one of the most frustrating places to be. Hopefully when you have your appt on the 16th you will finally start getting closer :fingerscrossed: :fingerscrossed: :fingerscrossed:

It's difficult to say how someone will react to any sort of medication, so I can't really answer your question about whether any anti~ds could make you depressed. All medication carries the risk of side effects, the only way to really know if something will affect you is to try it as sometimes a similar type of med to one that has been tried previously can prove to be effective with only the minimum amount oif side effects, or even none at all.

While your worries about possible changes are understandable, esp wrt your little man, do try to bear in mind that that is just what they are......possibilities. Just because someone may experience a rapid decline in some aspects of their FM, it doesn't mean that it will definitely happen to you. You may be someone who experiences a very gradual, even mild change over time, or find that things remain relatively stable for you. There is no one~size~fits~all with something like FM, it affects us all very differently and at very different rates.

When it comes to what meds can/do help, again it is difficult to say as part of the uniqueness of the condition includes meds. Whilst one may make a difference to some, to others it may have very little or absolutely no benefit it all, so it's a case of trying different things in various combinations and at different doses to try and find the most suitable cocktail for you.
Charlie276 wrote:I really don't want anti depressants or any meds but I've read a lot about those meds being good for chronic pain cymbalta I think is fda approved for the treatment of fibro

Whilst Duloxetine {Cymbalta} is licenced/approved for use in treating FM by the FDA, here in the UK no medication has such a licence or approval, however GPs, specialists etc do tend to use them when treating similar conditions. Duloxetine does seem to be becoming much more frequently prescribed. Milnacipran {Savella} doesn't seem to be mentioned as being used very often on here, and Wellbutrin tends to be used more as a smoking cessation aid rather than in the treatment of FM.

5~HTP is something very different to the meds mentioned above. 5~HTP {5~Hydroxytryptophan} is a naturally occuring amino acid which can be sold otc in the UK and other countries as a diet supplement. It is regarded by some as an anti~d, an appetite suppressant, and a sleep aid. Whilst some trials have indicated an effectiveness in the treatment of depression, as well as a sleep aid, much more research and larger trials are needed to determine it's full effectiveness.

Following a gluten~free diet has helped some FMers find some easing and reduction in their symptoms, unfortunately it doesn't follow that it helps everyone in the same way. When I tried it a few years ago, I found it made absolutely no difference in what I was experiencing. Again, it's something else that needs to be tried to see if it makes a difference to the individual.

Sorry I haven't been able to give you some more definite answers, unfortunately that is the nature of a condition such as FM....it tends to play by its own rules that it makes up and changes as and when it fancies it. Even with this tho, it is possible to wrestle some control and quality of life back from the chaos and mayhem it brings with it.
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Re: New here

Postby denys » Mon Dec 08, 2014 10:14 pm

Hi and :welcome: to the forum :cow-wave:
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Re: New here

Postby Charlie276 » Wed Dec 10, 2014 4:26 pm

Hi Fluffy Puppy and Denys,

Thank you for your responses. I think most of the info I see online is American so thats where ive been getting my info from.

I know im not depressed so will try to talk to the dr about other options however i dont know what this is dr is like apart from hes male, im at a new surgery so havent seen him before, its sexist i know but when i know its a male dr i dont expect much understanding or belief. they usually give me the impression that they think your a whiney woman and need to man up and anti d's will sort you out. Unfortunately they told me I had to see this GP.

Limboland is the most annoying place to be, drs always test blood and if they have normal results they say well thats good news, i always think it is NOT good news, i wish it was my thyroid or something so i could get some medication and hopefully feel better!

I will try the gluten free thing but TBH ive kept food diaries etc and my symptoms dont get worse with certain foods, ive done the no dairy and just when i thought it was helping it became clear it was nothing to do with it and i was just having a good few days.

The 1 thing that has helped me is diazepam, i think because it relaxes my muscles in my sleep as it has no effect the day i take it but the day after. I know you cant use them long term and the pain on day 3 is unbearable when the muscles rebound or something. Obviously if i tell the Dr that he will no doubt jump to the conclusion that im depressed at diazepam is an old school med they used for an anti d. Rock and hard place come to mind!

1 question, does anyone get a metallic taste when their symptoms flare? I didnt used to but now every time im in pain i have a metallic taste to accompany it?


P.S I love the quote about the dog, i grew up in a house where we always had a dog or 2 and thats exactly what I always used to say!! Ive been pining for a dog for years now but ive always said when ive found out whats wrong with me i would get one and now its 5-6yrs later!!
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Re: New here

Postby Zia2014 » Wed Dec 10, 2014 5:42 pm

Hi there.

My GP is male and really understanding, so don't write yours off yet! I think you can get cack males and females, I have seen two of each since my fibro started and all were rubbish apart from my current one!

Btw I got the metallic thing a lot when this first started, not so much now. I believe mine was caused by amitriptlyine/nortriptyline though, so maybe it's your meds? That or just one more weird thing we add to our collection :-D
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