Waiting to see specialist...

Bones, joints and muscles
1

Hi,

I'm a 35 year old male, waiting to see the specialist, and it can't come soon enough.

For around 5 years I've had a number of problems, including tiredness, lack of energy, constant aches & pains in joints (shoulders, wrists, fingers, knees, ankles, tops of my feet), breathing problems etc. It's at the stage now where I feel I've regularly got the flu and the aches make everyday life difficult. I can't exercise, my weight is increasing (up around 3 stone in 4 years)

Blood tests RE energy in 2010 & 2012 apparently showed nothing, but this year the doc looked at them and said I was anaemic in both.

Blood tests this year tested positive for RA and gout.

I don't really have the symptoms of gout, things tie in more with RA, but while the level was above the norm, it wasn't through the roof.

I'm on diclofenac, which has helped with the worst of my pain, but I'm still struggling.

I really worry that the specialist will fob me off like my doctor has for the last few years.

It's quite depressing, and just want to feel more normal. Does anyone have any words of advice that could help me?

Thanks,

Iain

2

Hi Iain,

I can really relate to this, I'm newly diagnosed and I just want to feel more normal too! I'm on Sulfasalazine, only my 4th week but I'm not sure it suits me too well.

Has your consultant put you on any DMARDs? Sounds like they should have done if you've been diagnosed with RA. My blood tests had no rheumatoid factor but the consultant thinks that's what I have as they look at the overall picture of symptoms along with X-rays of affected joints.

Do you have an advice line to ring, I was given one at my local hospital?

Good luck.

3

Hi Tog Pogle,

Thanks for the reply.

I've not been to see the specialist yet. It's taken 2 months, and that's privately in the UK.

Symptoms have been going for 5 years now, and I've been to the doctor so many times about it, that's why it's so frustrating. To put it into context, I didn't even visit a doctor about any illness in the 4 years previously.

I don't know too much about RA or Gout, especially not the treatments, but I'm learning through reading on the internet - which can be as dangerous as it is helpful.

Anti inflammatory medicines only help slightly, ibuprofen over the years and now Diclofenac isn't really doing much, so hopefully something else can be tried, perhaps anti-viral medicines... anything that helps! haha

As I've not had the diagnosis from the specialist yet, I'm worried that I'll be fobbed off again just as my doctor has done. However, with the blood tests being positive for RA and gout, plus all of the other symptoms and history, I'm hoping I can finally get some proper help.

I'm stunned when I hear that people get diagnosed and treated within weeks, and I've been struggling for a seventh of my life.

Thanks,

Iain

4

Hi Iain,

I cant believe that you have had to be in such pain for so long! that is terrible! I was one of the lucky ones who paid private and got seen within 2 weeks, and 2 weeks was 2 weeks to long.What part of the U.K. are you from? I really hope you have now been seen and put on some stronger medication? Methotrxate seems to be the first one they try you on and works great for most people, just takes time to work (12 weeks) As you will find the wheels turn VERY slowly in Rheumatology, which can be frustrating when your in pain, especially when you've waited as long as you have. Most treatments take up to 12 weeks to start to work, but theres always the good old prednisone and steroid shots.

I have had R.A. for 5 years now, and I still don't feel normal, but I feel I can cope with it now. Its just about adapting to your changing condition and focusing on what you can do, not what you cant.

I hope your now as pain free as you can be,and thatthey get it under control asap.

good luck, Michelle x

5

Oh dear Iain,sounds like a miserable time. Recently diagnosed with RA myself I can relate to the frustration and apparent apathy of the your medical care and suggest you see a different, more sympathetic GP . Is that possible ? It helps to have a surgery GP whom you leave feeling upbeat,not depressed.

As for RA and Gout,I also know little but you can help your Gout through diet,gout pain deriving from excesses of Uric acid sometimes caused by ingestion of food and drink high in Purines. Purines are particularly high in some fish,most meats and unfortunately , highest of all in beer. I enjoyed a wonderful Mediterranean diet of sardines and fresh fish on holidays,only to suffer weeks of pain as a result. Diets are VERY subjective but it's a good place to start your research,and it may take a while to have an effect.

You can check your Uric acid levels on your blood test results for yourself and lots of information on the pathology and triggers of Gout are available online. Best news is that you CAN control it and hopefully gain full control over it.

RA is a totally different thing and demands a lot from you. Symptoms are varied but can and will include the relentless pain you are currently experiencing. The psychological effects of RA diagnosis can be overwhelming and counseling can be an option-This will be a massive shift for you and those around you and a positive outlook is important,if not vital. Be kind to yourself,You are not alone with this!

I wish I had more answers for you but I don't.

They ( Rheumatology ) will dispense very strong drugs with various side effects and you will have a new set of symptoms to deal with,along side your disease. For this they will rarely have any empathy.

It doesn't get easier,you just get better at dealing with it.

I practise Yoga on a regular basis which is all that really helps to be honest, and have acupuncture too. My motorcycle has been replaced by a car and my day is filled with carefully planned strategies to avoid walking,carrying things or opening jars..

Hoping that your pain subsides and your mood improves.

Good luck

Damien

6

Hi michelle I think I have ra to ive been giving an apppointment to the hospital it has taken a month for it to come ive sufferd in pain for years but now im noticing things are getting hard to do like put on and take off jumpers opening things is getting harder my finger knuckles are getting like little round balls on the bone its so painfull I can hardley move my right arm my fingers feel like a truck has run over them I'm on tremadol but its not working for me the pain is making me feel sick ive been lying on my settee as I cant get comfortable in my bed I'm sore no matter how I lie

7

I am not being funny but have you tried a good does of Bran.  All Bran (not bran flakes) in order to throughly clear out your system of the stuff that comes out of the waste pipe at the rear.  You can get a build up over time and it starts to get into the bloodstream and poison the body and the symptoms are tiredness, lethargy, and because of the nature of the stuff and what are similar to poisons, then a build up can have a cumulative and bad effect on your health. 

Try a good few bowls of All Bran over several days at breakfast time, and clear out your system.

You have not nothing to lose and whatever, it will certainly not make you feel any worse and stands a good chance of making you feel much better.

I never put my faith in doctors and specialists - you should hear some of the things they have come out with when I have been to see them and in many cases they made symptoms worse.  Sometimes common sense and a bit of thinking is the answer as to what is CAUSING the problem.

Have you tried looking at allergies?

Was there something you did or started to eat or drink at the time the symptoms started?

For example a new paint on the walls that you are allergic to, a different kind of drink or food. 

I once went to a dentist with terrible toothache and she was going to pull half my teeth out - turned out I was allergice to mouthwash and my teeth were perfectly OK.

So do be careful when you see specialists.  They are only human and are not always right.

8

Hello michelle im 24 just had gallbladder removal surgery and now im being told my bloodtest shows RA Im really scared how does this effect your life ? Im so scared i dont know how to cope please help if you can x