Fibromialgyia & It's effects, what now?

Bones, joints and muscles
1

Hello,

I am new to this forum, I know of this website initially as my Dr advises it as a resource.

So I am 20 years old, and have had Fibro for over a year now. It seems I've been going round and round in circles. I've had 3 sessions of acupuncture, been referred twice to physiotherapy, done Pilates, been referred to the Clinical Assessment Service (CAS) and also to a Rheumatologist.

I've had an MRI and bloods done which were all basically clear, the MRI only showed some schmorl's nodes and an inflamed left disc which apparently has nothing to do with the pain I am experiencing, and I am on so many meds it's incredible I'm still walking.

I take Gabapentin 300mg three times daily. Gabapentin 100mg two, three times daily. Effectively 1500mg daily. Tramadol 50mg two every four hours, (usually eight daily). Notriptyline 10mg one at night and citalopram 50mg 1 a day. This is all in relation to the pain, and also the fact that the fibro is getting me so down.

Now what I would also like to add, and I apologise for such a long essay, but I really need some help, and/or advise. But I am also experiencing a high sensitivity to temperature, to which when I'm hot or it's hot I am sweating, and when it's cold I am freezing. Now most effected are my feet and toes, they are freezing no matter what I do, and are near impossible to warm up, to touch they are cold but otherwise they are beyond freezing, like ice cubes are between each toe. I've done some research and think I have Raynaud's Syndrome, but I'd like to know what I do next?

I have now been discharged from my Rheumatologist, and he advised the Dr to refer me for pain management, but I feel that is just a waste of time, although I am most of the time in some form of pain, stiffness, tiredness or ache's I feel this is going to be my life for now on. I would like to add that after doing hours of research I decided to try going wheat, gluten and dairy free which in my opinion has not helped. After seeing the rheumatologist he says he thinks it's Fibromyalgia that I have. Which is already what the GP thought. But still I have received no actual diagnosis.

Any help and opinions would be most appreciated.

Thanks,

Holly.

2

As far as the feet go I know exactly what you are going through, I can get into a shower which feels cold on my body but burns my feet to the point that it is almost impossible for me to stay in there.

I am waiting to go on the pain management course at Walton Centre in Liverpool, I have a couple of friends who have been on it and say that it is definitely worth going on but I like you have the same doubt as I to have been like this for over a  year  now. 

I am trying to get into a hydrotherapy pool which I am told is a great help. 

Best of luck for the new year and keep looking here and asking questions as everyone here knows how you feel as we are all in a similar position.  xx

3

Thank you so much for your input, it actually means a lot. and I am sorry to hear how much it effects you. I am too wanting to go to a hydrotherapy pool as I have read they are very good for this condition.

My Doctor said that he feels pain management would be of little use for me, and when I asked about a local hydrotherapy pool seemed unsure, and told me there used to be one local but had shut and he believes the nearest is ashford (far away) but he'll look in to it and that I should ring next week to find out about it.

It's such a shame that there are conditions like this where there is near no type of treatment, I mean for me it looks like my last option is the hydrotherapy, and if not? I don't know.

Thank you again,

Holly x

4

Hiya Holly, poor you, I have had Fibro now for about 17 years and was diagnosed with Sjorens  Syndrome first would you believe...firstly once your meds are sorted you WILLfeel better, I found this an issue also...extremes in being hit and cold are just part and Rachel if Fibro..you will learn how to cope with that-my feet always feel cold..when inside my house or anyone's fir that matter I always have hot water bottles close by..good for all areas...a pain clinic dies wonders for you..please go....hydrotherapy is just excellent, you can do it in any local pool..you don't need to have a special hydrotherapy pool near you...I have a sauna with infrared at home..it's just fantastic for this inner pain..hooe and oray all gets sorted out fir you real soon, unfortunately it takes a bit of trial and error at first, but you will get sorted we all do in some way...be blessed..:-) xxx

keeo researching I did...it really helps...

5

I tried acupuncture last January but it didn't help me at that time but I will be trying it again.

If there is a health farm they would possibly have  hydrotherapy pool.

Best of luck 

6

Sadly with Acupuncture it was only a temporary fix for me, which only lasted a very short while, and I would have to go daily to actually be of great benefit. Everybodies different I guess, and hopefully you'll have more luck with it.

Thanks,

Holly. x

7

Hello Christine,

With the Fibro, have you found any particular meds I haven't listed which were of a benefit to you? Or is there any other things that you do. In regards to the hydrotherapy I am researching where to go, and when the weather isn't as cold will be doing swimming etc..

Sadly with the winter I feel my joints are alot stiffer and my bones click contantly. I am appplying a special gel to my knees often as they have gotten bad. You wouldn't believe I am 20 if you lived with me. And the problem is with Fibro, you look healthy on the outside, but on the inside I feel like I am dying. It's horrible.

And how did you manage to be diagnosed? And were you given a treatment plan? Sorry for all the questions.

Thanks again,

Holly. x

8

I am really sorry to tell you but i have been through the exact same. Just passed from one doc to another with no real answers. I had to come off all pain killers as i had become allergic to them. I can't take anything with morphine in it cause it drives my skin mad with itch. I am now only on paracetamol wich doesn't really help. The best thing for pain i have found is accupuncture which made me pain free for 3-4 months. It was like heaven. Only problem is you have to wait 6 months in between each session. I have even tried injections and had to pay for them but they seem to have made me worse. I am now back on the waiting list for accupuncture.

Have you tried this yet?

Sandra

9

Hiya Holly, the only meds that help me is amytriptiline,I also take panadol Osteo 3 x day..I take the amytriptiline at 8.30pm by the time I'm ready to hop in bed I'm ready for sleep..It gives me a good nights sleep- which is imperative for you with dealing any pain the next day..at least  it's manageable..I also take vit D very important, I also take Q10-Geonzyme..boost energy levels...good for heart support too- that's just a bonus I guess. It takes a while to work out what suits you the best,,but I couldn't function daily without the amytriptiline,p-the only prescription med..hope all gies well fir you..:-) xx

10

Hi Holly,

I currently feel the same i take Gabapentin 300mg 3 x daily so 900mg in total then Co-Codomol 30/500mg 2tabs 4 x daily and if its bad she takes me off the co codomol and gives me tramadol. They have just given me Mirtazapine 30mg 1 to be taken at bedtime because i broke down in front off her. I take all these and feel so drowsy at work. My Rhumes gp asked me if i felt the gabapentim was working and to be honest i cannot feel no difference so he told me to stop. I feel i have JHS instead of fibro but i doubt my gp will  listen 

11

Hi Holly,

I am also only taking Amitryptiline at night to help with sleep and some of the pain. I also sometimes take paracetamol during the day but these only take the edge off the pain. Maybe you could ask your doctor to slowly reduce some of your medication as it doesn't sound as if it is working. I was on Amitryptiline for quite a few weeks before I felt any benefit but have been fortunate to not have the side effects some people have. I am not pain free and can only manage to work 13.5 hours per week (from 24) due to fatigue and pain but I am better than this time last year (before diagnosis).  My advice is to try anything that is offered to you to help you to help yourself- pain management, CBT, hydrotherapy, meditation, physio etc. They won't all work but eventually you will find something that helps. I am due to start hydrotherapy and intense physio in two weeks. I am not sure what to expect as I have to go every day (Monday to Friday) for two weeks. I have real problems with my hands and arms and this is causing difficulties at work as I cannot do as much keyboard work as I used to. I'm not sure what will happen at work if the hydrotherapy doesn't help but I'll cross that bridge when I get to it. Some private gyms have hydrotherapy pools - some Total Fitness centres have them but you have to pay for treatment - not sure if this would be an option for you.

I also find Tai Chi helps as it is a very gentle form of exercise.

From reading many posts on this site over the past few months it seems that medication alone is never the answer but it is a lot of trial and error to find out what else works for you.

I hope you find something to help you as you are very young to have to cope with this.

Take care and I hope this year is better for you.

12

Hello Holly,

There is lots of good advice on here already, and it seems that what works for one does not always suit another. It is all trial and error, and I am still on that journey, having been recently diagnosed.

I think if the rheumo said he thinks you have Fibro then I should take that as a diagnosis!

I am amazed at the amount of meds you are taking, and if you are still in pain, p'raps you could ask your Doc to help you get off some of them. Like a few who have already posted, I only take Amitriptylene, 50g about 5pm. Helps with sleep, not so much pain. I sometimes take Ibuprofen if I am having a difficult day. Doesn't hppen too often as I pace myself, take naps when I need to, work and looking after granchildren permitting! I am never free of pain, but it is usually bearable. Wish you luck in finding out what suits you.

Take care, Anne

13

Same meds here.....but I take Osteo Pabadol 3 times a day.too, can't take ibruforen .but taking that  thAmitriptylene a couple of hours before bedtime. at 8.30 along with the 2.Osteo Panadol is amazing ...great sleep, soooo  helps you to cope with the next days pain better..it us just sooo copeable.  :-) Oz..

14

Hello Christine, I see, what is Panadol Osteo? I like in the UK, is that something that I can be prescribed. And how did you manage to get prescribed amitryiptiline? As when I asked about it I was told that it would be better to put me on nortriptyline which is in the same family but apparently better lol.

Anyway, I hope your doing mell!

Thanks,

Holly. x

15

Hello,

It's realy awful, having no hope or breakthrough when it comes to treatment.

I take so many meds for the pain. The trouble is, I was looking into Hydrotherapy, and when speaking to the GP found out that there are no local ones on the nhs, and the ones that I can pay for are only on a Monday and on a Friday. Between 08.00 and  11.00 am.

Work stops me from doing a lot of things, and it's not something I can exactly explain to my boss being that this is a new job.

On the bright side I have spoken to my GP and he has agreed to refer me to the Pain Clinic.

And I have tried accupuncture which I found as a temporary fix.

Thanks,

Holly.

16

Ah bless you, I know the feeling. Most of the time when I speak with my GP I end up in tears, I am very emotional when it come's to the Fibro. and I'm so frightened that I end up in a wheel chair. 

I can feel my joints getting stiffer, my body getting weaker. My fingers are now starting to hurt, I get shooting pains in my knees also. My back is so bad it's near unbearable. I mean my pain relief takes the edge off, and helps a lot, I mean if I didn't take it I'd certainly notice the difference. But even with the pain relief I am sometimesI in agony,

I do find it scary, thinking of the future, I mean i want to learn to drive but with all the meds I take, plus I can't turn my neck properly as the pain is unreal. And I love going to theme parks, and usually go every year, but haven't been able to since I am so weak.

Thank you for your help.

Goodluck with everything, I hope this will be all sorted for you.

Holly

17

Hello Denise,

My sleeping pattern is very messed up, And my Dr doesn't seem to want to give me any tablets to help me sleep. He gave me a two week supply a while back, which helped me sleep like a log. But after asking for another he didn't want to.

Luckily there are a lot of posts on here that I can take the time to read, and study the internet a lot to make sure I am not missing out on any up to date medications or opportunities to improve my quality of life.

I just hope that a cure will be available for Fibro in my lifetime, although my thoughts are that I'll be too old to be able to make the most of having control of my body again, being able to get out of bed pain free, walk up and down stairs and be able to walk even so much as short distances without being in agony.

Every movement I make my bones click.

Good luck with everything.

Kind regards,

Holly.

 

18

Hello Anne,

I appreciate your input, I have noticed that a lot of people are on different meds, and different plans concerning their Fibro, I just wish that My GP took it more seriously, and treated this like a serious issue, as for me this is serious.

I feel like my life has completely changed, and I am not the person I used to be, I just woke up one morning in agony, and rang NHS111. I couldn't get out of bed, I could hardly move, and I didn't understand what was going on.

It's nice to have people on here who understand what I am experiencing. No body understands what I am going through. They just think things are ok, or that I am managing, but inside, I am depressed about this whole thing, which is why I am on the citalopram.

Which is why this Fibro is a vicious cycle, I can't move/excersise much because of the pain, which makes me depressed, the stress/anxiety makes the Fibro worse or even flare up which makes me suffer even more.

Thanks again,

Holly

19

I am on pregablin 300*2 per day having been Gabapentin previously and to be honest I haven't noticed any difference between them.

But it's worth a try. I have been on amitriptalene but they wanted me to go to 150mg each night but when I got to 125mg  I was completely dried up so I have reduced it back down to 75mg but I still struggle to sleep. 

20

Holly, your not on your own when it comes to emotions. 

yes here I am a male that is admitting to tears.

I have ended up exploding at a male gp who frankly shouldn't be allowed to practice anymore. 

I went to him in agony with my hands and feet in so much pain that I was struggling to get out of bed and to the point that I felt like my nails were being pulled out with pliers but all at the same time. 

The pain clinic "I am told" is fantastic to help get your routines in order and how to pace the tasks to help you to get through the day.

It's a shame about the hydrotherapy but maybe you will find a swimming pool close that has a warm pool available