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Date: 31.07.2012
From: simon

Subject: Frustrated

Frustrated and really need some advice please - new to site!

I am a 37 year old male who was diagnosed with PA in January 2009. After an initial stint of Methotrexate which caused liver issues I was lucky enough to be put on Humira in January 2011.
2011 was a revelation and throughout the year I was getting better and better, to the point in October where I was confident enough to take a promotion and feel that I could get on with my life.

However, in December time I started to get lower back pain then stiffness in the lower back, gluts and hamstrings. Over the next few months it extended to calf's and eventually to point where I was in pain standing on my feet for longer then 10 mins. The stiffness was at first intermittent then from March 2012 onwards it just got worse until eventually it is constant hovering between 2-6 out of ten for pain and 3-9 out of ten for stiffness. It is a slightly different stiffness and pain from the PA symptoms as it seems more muscular. Exercise seems to make it worse and have hence put on 2 stone.

Along with this the fatigue started to come back and I started to go back to having 2 hours sleep during the day and 10 at night just to keep going. Obviously this has effected my job as I have to keep finding excuses or lying as to my whereabouts to cover myself. This can only go on for so on.

I have been back to the Rheumy & doctors and am not getting anywhere. I have suggested Fybromyalgia but I am not tender in the pressure points when tested. I have to go to frequent massage to at least relieve the symptoms for 24 hour relief. I have been for x-rays and no probs with the joints. Although after a recent MRI scan they found some minor issues with arteries in my head and have referred me to a neurologist. Can you believe I was told this by my rheumy on an answer-phone message finishing off with that he was going on leave for 3 weeks and was not able to speak to me till he returned!
.
I am at a lost as to what to do. I am tired and fed up with the lack of understanding and no-one helping me to get to the bottom of it. It is effecting my job, and I know if I cannot get any answers soon I will be at a point where I will need to leave as I cannot fulfil my job role.

I just want some answers so I can understand how to fight this. I have given up alcohol, changed my diet, but nothing seems to help. Nothing in my blood tests suggests anything!

I donāt know what to do I am at the point where I will need to think of what to do about work!

I would really appreciate any advice or help as I am nearing rock bottom!

Simon frustrated from Sussex!
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Date: 31.07.2012
From: marlene

Subject: Re: Frustrated

Hi Simon, welcome to the forum. I don't
know much about PA only what I have learned from this forum. I am an OA sufferer.
It seems that everyone including myself goes through all this frustrating stuff before we get diagnosed fully.
I am sure some of the girls and guys on here will give you much advice and support.
Don't throw the towel in just yet. Chin Up and I hope you get answers soon
Take Care.
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Date: 31.07.2012
From: simon

Subject: Re: Frustrated

Thanks for your kind words - I would appreciate any help especially around fybro!
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Date: 31.07.2012
From: Deborah

Subject: Re: Frustrated

Hi Simon,
Just wanted to let you know that I also suffer from PA have had it for 12 yrs and have it in all the joint,s.
I had to take early retirement due to this as I could not function properly at my job and I found the stress just to much also I had 2 young children at the time which I was not able due to my disease to be a proper mum to but I did the best I could with the help of my husband who also had to give up work.

It has really changed my life so much.
I wanted to reply to you as I have had quite a lot of bad headache,s and alway,s have put it down to my arthritis as I know PA affect,s so many thing,s .

Also wanted to ask you if you don,t mind ,
Have you a very stressful job?
Do you suffer from headache,s and if you do are they in 1 particular place?
Has your employer made any effort to make life easier for you at work?

The reason I ask all these question,s are stress make,s the disease worse.
And the disease can affect arteries, internal organ,s,musscel,s skin, tendon,s,eye,s, as well as the joints.
And employer,s must make allowance,s for people who have a disease or illness that make,s them unable to carry out the same duties as a healthy person under the disability law,s not sure what these are but I am sure you find out throught Arthritis Care and other help group,s.
Also I wanted to ask you If you have headache,s and how do they affect you if you have any as I suffer from terrible headaches and was just wondering if I have the same problem as you have.

Was glad to read that humira had helped you as maybe they just need to try you with a different bio logic.
I do hope that you can get relief shortly and also wanted to let you know that you are not alone. Deborah xx
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Date: 31.07.2012
From: rhona

Subject: Re: Frustrated

Hi Simon, sorry to hear that you are having such a bad time. I have r/a and have an idea what you are going through. It doesn't seem right that you were left a message saying they were going on holiday, surely they could have got someone else to speak to you. I would phone the hospital and ask someone to speak to you and explain what is going on.
If you found the Humira worked for you then perhaps another anti tnf would help.
Hope you feel better soon. x
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Date: 31.07.2012
From: chris

Subject: Re: Frustrated

Hey Simon,
I've got PA also, i have had almost exactly the same symptoms as you, as a side note i'm from sussex too (brighton). I'm 38 now, got P at the age of 10, 1st PA in my late teens.
I thought the standing thing was specific to me, i presumed it was from nerve damage cause by too many erythemic feet episodes.
Anyway i digress, i have a wonderful drug to suggest to you, it's for chronic pain and nerve pain (which i presume is what triggers the stiffness in the muscles).
'Pregabalin' your GP can prescribe it, or you can ask to be referred to the chronic pain clinic, and they'll prescribe it to you.

http://www.lyrica.com/Default.aspx

It does have side effects, which i found similar to alcohol - being drunk. Unfortunately they go after a couple of months!
As a side note, i was a big social drinker, i drank to 'feel' normal, i wonder if i was 'self medicating'... Alcohol does suppress the nerve system.

I would also look at 'mindfulness', it is excellent for helping to deal with chronic pain.

All the best mate,
Chris
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Date: 31.07.2012
From: Simon

Subject: Re: Frustrated

Hi Deborah,
Many thanks for your comments. In answer to your questions -

Have you a very stressful job?
Semi-yes as work in banking although not the city

Do you suffer from headaches and if you do are they in 1 particular place?
Mainly front behind eyes and forehead

Has your employer made any effort to make life easier for you at work?
Difficult really as the arthritis has been in remission so I cannot say that this would be an issue. The muscle and tiredness is an issue though and I am not sure how they could help. I do have some flexibility but there are days when too exhausted or brain struggles to interpret information. I wish I had something physically wrong as it people can see the problem. I feel such a hypochondriac as its so intermittent. Also being in an environment where performance is key it is difficult to show weakness.
It really does take everything to keep standing. Although for the last week I have struggled to do any work at all. I feel so low I cannot concentrate.
I understand where you are coming from on the stress side! However, to give up my career after 20 years hard slog is a hard choice!! It may be a decision I have to take but want to look at every avenue I can!
Thanks you for your advice!
Best
Simon
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Date: 31.07.2012
From: simon

Subject: Re: Frustrated

Hi Chris,

Many thanks for the advice on the drugs.

Did your rheumy originally prescribe this too you? Do you see the consultants at the Sussex?
I must say I was also a big social drinker and yes the pain was very much reduced! Especially as the nature of my job involved networking and client entertainment! However I reduced this to zero when I started on Methotrexate. It was an amazing shock when you do this and realise how much everyone else drinks around you and how much I was guzzling!

However, in the last 4 months when I have do have the odd beer or glass of wine it almost feels I have become allergic to the stuff. 1 beer brings on a hangover the following day! I tend to shy away now as the result of a few beers makes the fatigue and stiffness 10x worse and its just not worth wasting a day!

Most of the time my pain is controllable is more uncomfortable 90% of the time and I am constantly finding myself trying to stretch just to relieve some of the pressure.

I will definitely look into what you have suggested!

Very much appreciated
Best
Simon
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Date: 01.08.2012
From: chris

Subject: Re: Frustrated

Hey Simon,
It was originally prescribed to me by a locum GP, i was doing CBT with a counsellor to help me manage the depression. She pointed out how my 'mood' was directly related to pain and wrote a letter to my GP to refer me to the chronic pain team. I went to the GP's for the formality of the referral letter, and the locum said they'd only give me this drug and prescribed it to me then and there.

I did follow up the appointment (it's up at the clinic in hangleton) and he confirmed that that is the only drug they use anyway. Although he did also say that i should use more paracetamol as it gains effect when used in conjunction with other pain drugs.

Let us know how you get on.

I do see a rheumy, although for most of my life i've only seen a derm. The derms are based at Brighton general (up elm grove), and i've seen rheumys at Brighton general too, altho for convenience i see the same guy (papasavas) at the clinic in hangleton.
I've have mixed emotions with the rheumys, they're medicine seems quite 'backwards' to me. In fact i think the medicine for immuno disorders is lagging way behind, they seem to be stuck trying to 'fix' symptoms, and none are looking at the cause.
Still i'm sure this will change with time.


All the best,
Chris
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Date: 01.08.2012
From: Deborah

Subject: Re: Frustrated

Hi Simon,
I know what you mean when you say you wish you had something people could see and accept the fact that there is something wrong feel exactly the same way myself.

I can understand your reluctance to take early retirement as no one want's to down the benefit route as from my own experience you never seem to have enought to keep everything going. But with these disease's they are sometime's so unpredictable it does effect so much in life especially work as we are still expected to function as normal fit human being's even though we are not we just have to make the best decision that we can.

I also totally agree with you when you mention wine/spirt's and have found that even though you may only have had a small amount you feel really bad the next day so I too find this is the case. I just would take 1/2 glasses of wine to a special meal and that's it because you're right it is not worth it. I stopped socialising when I first took this as I did not have the energy at time's to talk to people and anyway when your friend's keep asking you to do thing's and you have to keep saying no because you are not physically able they get fed up and stop asking you.

The place were you have your headache's is not the same place as mine, mine are the bone just behind the ear and it never move's they start in the evening and you can't sleep with them and can last through to the next evening and of course are horrid so I am afraid of to the doc's.Thankyou for letting me know where you have yours.

Hope what ever you decide everything work's ok for you and let us know how you get on with the neurologist.
Good luck and all the best for the future Deborah xx
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