keeping cheerful is difficult.Warning long rambling moan.

PowerOn

Hi eveyone,
do not know what is wrong with me today, I feel very down and sore, feel like I've gone 20 rounds with mike tyson (boxer for the younger folks) and have been left reeling.
I think it is due to the complete lack of progress on finding out anything about why so much pain and the confusion caused by good days then today when everything is sore and my left arm feels so heavy but I know that when I have to get up and go I will do so, if I am capable of getting up and going am I really that bad?
I was told my leg bones have been curved pre birth and this was not found out until I was 49 and that has caused OA in my feet and leg joints and caused pain in my back yet even so the doctors are so dismissive of my pain and treat me like a moaning minnie.
I have had x-rays which show oestropytes and wear and tear in my spine and neck and am told "everyone has those, they are normal" yet on here I read people posting how painful they are.
I have had physio for my neck before the oestrophytes etc were found and even this worries me, as what damage can be done if physio is given without knowing there are oes etc.
So if I get help I moan, if I don't get help I moan!
One of the biggest annoyances is the waiting time for a GP appointment- in my area 6 weeks if you are not an emergency.
I wish GPs were people and not defenders of the public purse who seem to think everyone is out to get something from them, well I do want something from them, proper treatment and respect would be lovely.
Not sorry for moaning sorry I am sore and fed up and GPs are an extra burden to fight not a resource to use in the fight against pain.
Yet as I say when push comes to shove and I need to I can get up and go unless I have done something silly like gone to the shop and carried a bag home, that sets off my back and I am sore for ages afterwards.
Maybe what set me off is going out with my daughters and not being able to keep up as I could have done a while ago, "slow down I can't keep up, carry these bags, I just need to rest for a bit etc etc." not used to being like that and it made me realise that I have not been so bad recently as I have been protecting myself have doing most things, I have found out what hurts (bending down, running, cycling etc.) and not doing those things.
So maybe I am just getting old, 50? or is it down to the OA and wear and tear and oestrophytes and maybe fibro?
I used to be hyper fit, walking, running, cycling, yoga, pilates, swimming, I don't really think it is just getting older as I had to stop things nearly overnight when I just could not stand the pain any more.
So just rambling trying to make sense of everything, and feeling fed up and wishing GPs were human.
Trying to think happy thoughts but just not working today.
Am planning on asking for more xrays, but is there any point when the ones already done have shown up problems that the GPs say are just normal anyway? Will ask anyway as my knees were never xrayed, was told I have OA in them from the way they refuse to move normally, they dont glide smoothly.
I need physio to stop things getting worse, I don't want tablets as I think they cause too many side effects, I think that annoys the GPs as if I am not bad enough to take tablets why go to the GP? my answer is for physio.
I know that people judge us on how healthy we look, all my family look very young and a lady I know who is the same age as me gets all sorts of offers of help because she looks about 70! yet she has no health problems lol not being nasty just wondering should I get a bucket of grey hair dye and a make older!

kentishlady

Hi Poweron. Sorry you are feeling so down in the dumps today and do understand how you feel. I'm feeling little fed up too. I've got OA in my back with 3 discs affected and osteophytes which add to the constant pain and walking makes things worse. Like you, I make an effort to go out but by the time I arrive back home, often in complete agony, I wonder why I bother. However, as staying indoors looking at 4 walls is, to say the least, boring I continue to go out. I also find GP's to be very unhelpful at times. Mine has tried me with all sorts of pain relief but everything we try gives me the most awful side effects. Have recently been on pain patches but have now had to give up on those too. Saw my GP this morning and told her I can't continue putting up with a swimmy/muzzy head and permanently feeling I am losing my balance. She explained that as I already suffer from ear problems - tinnitus - which affects balance - the side effects from the pain patches which are morphine based, are being multiplied. Have recently had a fall which hasn't helped my back (discovered one of the less common side effects of pain patch have been using is "increase in personal injuries - i.e. falls." Don't want to risk anything else and the patches weren't doing anything to alleviate the pain anyway! Am now back to just the paracetamol plus a codeine with it as and when I want to take one. I do have a couple of so-called pain-relieving gels but they don't do a lot. I think half the problem with GP's is that they don't really understand what it is like to suffer with OA. That is understandable in a way as with everything it is hard to empathise with someone if you haven't been through the same problem yourself.
Hope you can get some physio sorted out. Take care. Beryl

stickywicket

It really is getting to you today, isn’t it? Yes, that’s how it is. Some days we cope and other – almost identical days – we don’t. You’ve come to the right place to get it all down and out, PowerOn.

Why so much pain? Because that’s what arthritis does, I’m afraid. It must be very hard if you’ve been ‘super fit’ up until now and I can see you’re struggling to get a diagnosis that will explain why and maybe how to get rid of it. But OA is OA. It has its own agenda and, unfortunately, it doesn’t go away except in the odd replaced bit. There are good days and bad days, good times and bad times. You will have some great, happy times ahead of you but you won’t go back to being super fit.

It’s very unfortunate that yours seems to stem from pre-birth although I don’t know if anything could have been done anyway if they’d been onto this sooner. Maybe you’ve been lucky to have so many good years.

GPs do sometimes seem dismissive of OA. I think that’s probably because there’s so little they can do for it – physio, paindullers, surgery. I can see that, if you say you don’t want ANY dullers, they will conclude you’re not in too much pain. You should be referred for physio though and, in your situation, I think I’d insist. No point in worrying about potential damage done by previous physio. A new course of treatment would take into account your current X-rays. My neck bones are such that I scare anaesthetists but I still do what neck exercises I can.

The 6 week wait for a GP is, I believe, not just ridiculous but also illegal. This is something that you really can tackle. Contact PALS and deal with it immediately.

I hope you soon have a run of good days. They help.

tjt6768

I'm really sorry that you're having such a dreadful time..
I can't believe that they said osteophytes are NORMAL :? They are a deformaty of the bone from what I've been told. And boy can they cause pain.. They've only to grow somewhere near a nerve and it's pain city here we come...
As for the GP waiting list, please take Sticky's advice and check that out, it's dreadful..
And, unfortunately the GP's probably do think you can't be that bad if you're refusing meds, wrong, I know, but probably true..
I wish I could help more but all I can say us that you're in the right place to vent.. We all understand what it's like..

I hope things ease up soon. Keep posting..

dreamdaisy

OA is debilitating, demoralising and depressing. So is RA, PSA, AS, sero-negative, sero-positive and all the variations in between. It's how it is and we understand how you feel. The auto-immune kinds do need scary meds, OA on the other hand needs exercise, rest, maybe physio and pain relief. I won the arthritis lottery as I have both sorts. Clever Daisy. :roll:

You may not wish to take pain relief but please consider the fact that it can help - it dulls the sharper edges and helps us to cope better. Knowing what triggers things is good as is learning to pace oneself. Walking aids are useful (Ive recently graduated to a rollator and the difference that has made is amazing. At the moment, however, I can't wrestle it from my mum's grasp.) I'm fortunate in that I've had lousy health since 18 months old so I don't think twice about meds and side effects, coming at this from a healthy background must be hard. I've been playing this lousy game for sixteen years now and every now and again it still hits just how monumentally unfair it all is. DD

PenJ

Sorry to hear that you are having a really bad day. I'm off work today cause my RA has decided to be particularly unkind to me today too.

I'm a physio and let me put your mind at rest a little about osteophytes. Although they are alarming if you're the one diagnosed with them, they are a "normal" wearing of the joint. It just means that instead of having lovely smooth edges to the joints like you had when you were born, they are a little rough through wear and little spurs have formed on the edges of the joint lines. The reason people don't get excited about them is that they are extremely common and the presence of them alone doesn't diagnose or predict pain. It all comes down to luck as to exactly where they are. Many people have them all over the place and are completely symptom free as they don't interfere with any soft tissue, joint action or nerve. This is the reason when they are seen on xray nothing is done. If however you are particularly unlucky, they can aggravate the joint, soft tissue or nerve and cause discomfort. But due to the complex nature of bodies, just removing them will not necessarily do anything to your symptoms, another reason why nothing is done on finding them on X-ray. It's all down to symptom patterns, joint stresses and biomechanics.

It sounds from your description that you have a number of biomechanics things going on and you should definatley push for physio input. They should be able to look at the way you use your joints, identify symptom patterns and come up with a plan to help you. You may find that acupuncture may be helpful for your pain management if tablets don't agree with you, physiotherapy use this very frequently and should also be avalible to you if appropriate.

As for 'damage' from your previous physio, you would have been treated according to symptoms, even if they did manual techniques on your spine with osteophytes present this would not alter the state for your joint or osteophytes.

Good luck with getting seen, don't take no for an answer and hope you feel better soon.

stickywicket

Very interesting stuff about the osteophytes, PenJ. It makes sense. Thanks.

barbara12

Oh poweron..I am a lot older than you 62,but I really can connect to what you are saying...I have had day were taking my GDs out is such hard work..unlike when they were little , and I come back and feel so down about everything....so what you are feeling is normal, and how hard it is to get the right treatment, and on and on it goes.
What I am trying to say, its good that you are able to get it all out on here , I do hope that you get some relief very soon, please try and get some me time.
Sending you lots of gentle hugs ((((())) xx

ShulaArcher

Hello

Just calling in to say I'm sorry about all your problems and hope tomorrow will be a better day for you. I agree with what's been said that you should be able to see your GP much sooner. If a receptionist can only offer you an appointment in six weeks' time, then you should ask to speak to the Practice Manager.

Shula

PowerOn

Everyone is so kind, I really appreciate the time people took to read and answer my very long post.

I was so very sore and fed up this morning and the long wait in between appointments just slows everything down to a ridiculous point.

The Gp practise is still taking on more patients so appointment times are not going to reduce, I have complained in the past, the answer is, "if it is an emergency you can have an appointment today"

I am not an emergency so I just have to keep waiting then get sent for blood tests and wait several weeks to discuss the next plan, the blood tests all came back normal except for one borderline result.

It just leaves me hanging around feeling more useless.

I have tried painkillers but they have never agreed with me, I once was taking painkillers which stopped the pain from a dental abscess and never touched the OA in my knees, apparently they work on different neurological pathways.

I have been in hospital a few times (not arthur) and written off resulting in family being told on several occasions that I would not live so after those experiences I have learned to be tough and soldier on, maybe that is what is getting to me, the thought of going back to pain and disability which with arthur does not improve.

When I was 22 I just wanted to be able to sit up, breathing without pain was a wonderful accomplishment, that was from an operation which was due to medical neglect and the prolonged bed stay after led to severe muscle wastage, I did improve fully eventually.

I know how bad pain can be and the thought of getting worse is depressing, I think I don't need to say too much about that, we are all fighting the same battle.

I had to go out earlier and did mentally enjoy the walk, a beautiful sunny crisp day but oh boy did I hurt!

My idea is if I am sore sitting inside and glum may as well go outside and be sore and happier, not sure how long that is going to work as I am surprised by what is hurting (new places more intensely)

PenJ thank you, it is nice to hear from a physio as I think physio is the way to go for me, the reason why I am so annoyed about the GPs being so dismissive of the oestrophytes is because I had the back and neck x-rays due to pain and inability to move normally so for the GP to scoff that they are normal etc was to my mind wrong, the symptoms were there which is why I had the x-rays which showed up the oes and the "wear and tear" if there was no pain, no movement problems I would not have gone to the GP or had x-rays taken, sorry I hope that does not come across as rude, just explaining why I can not understand the GPs attitude.

Not helping that as I type my hip etc is letting me know it does not like me.

kentishlady, stickywicket, tjt6768, dreamdaisy, PenJ, barbara12, ShulaArcher Thank you all for taking the time to read and reply it means a lot, gentle hugs to all.

stickywicket

You sound to have had a very tough life, PowerOn (No, you didn’t sound at all self-pitiful, only frank) and it’s clearly made you very resilient. This will help a lot in dealing with arthritis but I think you’ll do even better if you learn to acknowledge when you need that bit of extra help that the dullers can give. I know you’ve had a hard time with them but you yourself have pointed out that it’s ‘horses for courses’ with them and sometimes we all need a bit of trial and error to determine which ones work for us without the dreaded side-effects. Of course you also need the physio too, though.

However, this is going to be a hard struggle for you if you can never get a GP appointment. I really do think you should contact PALS over this situation (You can google it to find your nearest one). Or, just change practices. A friend of mine had to do that recently as her large stomach (She weighs about 8 stones soaking wet) was dismissed several times as weight gain. She changed practices and has now had the malignant tumour removed and chemo. Some practices are just poor. Waiting for appointments is an inevitable part of arthritis but you should definitely not have to wait so long.

PowerOn

Thank you stickywicket, my medical history is a mess of not being taken seriously, I was told in one night by 2 hospitals and my GP there was nothing wrong with me so went to another hospital and refused to leave, resulted in emergency surgery a few days later, that was when I was 21.
I do not understand doctors and nurses and the total lack of care.
Sometimes I think I should take my medical notes and give them to a solicitor and make the doctors sorry.
I have been told hospitals do not keep medical notes after 8 years, that's ok surgery leaves plenty of scars which tell their own story.
I don't think I have the energy to fight them though, just want to stop this getting any worse then it is already.
I will look up the site re appointment times and see if anything can be done, this appointment that I have been waiting for is 7 days away now so I will make sure I get good value out of it.
I hope your friend recovers fully, a family member was told a similar tale and ending up having extreme surgery due to the delay, she will never be fully recovered but is also tough, should not have to be but we seem to be in the hands of (be polite now) ohh hopping GPs why don't they listen!