All results negative

PowerOn

Fbc esr crp uric acid bone profile rheumatoid factor all normal.
GFR borderline repeat in one month.
So no answers there then, bit fed up-I thought some results would mean a plan of action could start and improvements could start.
I walked about 2 miles yesterday in a lot of pain but determined that while I am still able to move so much I will continue to do so, along the way my left hip joint and right knee felt at different times like they would crumble and I fully expected to fall over a few times, the results being normal have really surprised me as I really thought my bones must be getting thinner.
I did think I was pushing my luck but need to know if any of the pain I have is due to muscle (I didn't think it is as the pain is all deep) so today I woke up and no extra muscle pain so I think I have proved it is not a muscle problem it is the joints, in fact I went for a quick 20 mins fast walk this morning and was not too bad untill I got home sat down and now the inside of my knees feel like they are on fire.
My left hip is letting me know I annoyed it too.
And a few other places but the burning in my knees feels like a too hot water bottle is there.
I hear people talking about burning pains does this sound like what others experience?
So I think that is long enough 8-/ any one get to the end lol!
Stupid knees, hips, ankles, fingers, wrists, neck, throat, shins,toes, feet, some doctors.
Anything stop the burning?

LignumVitae

My bloods have never shown up anything terribly exciting. My consultant's have never used them as a stick to measure me from, using other things instead, such as a decrease in my activity and other general health factors. The one time I had one of those fancy scans to show up inflammation it was mad and like a fire so the fact that my blood showed nothing was proved to mean nothing.

I like your own diagnositic walks, I think that is a good idea. If I were you, I would write those down and take them with you next time. I once had a letter from an old consultant and had to see a new, not consultant, rheumy who started telling me I needed to exercise and get out more. When I pointed out that the letter opened with the line 'this lady, when not in a flare can usually manage walks over ten miles' he shut up on that line of patronising advice! I think it really helps if you can show you have tried to make the effort and that you have noted what has stopped you.

PowerOn

LignumVitae "exercise and get out more....can usually manage walks over ten miles'"
That drives me mad with medical types they say "do more" they never ask how much you do already, never seems to occur to them we are actually trying to help ourselves these are our bodies and our lives not a game.
I once went in with a list of what hurts and the GP looked like I should be locked up,she never saw it as my trying to sort problems out by giving good information in order to get good treatment - I no longer book appointments with her.
Do you mind me asking what the scan was that showed up the inflamation as I have booked another GP appointment and am not being fobbed off, I want answers.
I hope you are getting proper care now.

LignumVitae

I'm not sure but I do know they are quite new. My rheumy department is in a teaching hospital so it's quite swanky. The scanner looked like one of the ones you use to scan for babies, hand held, use gel etc. I am seeing a friend later who might be able to give me the name so if he does I will put it on here for you.

I once got told by a GP that I should give up trying to manage my arthritis, if I tried long enough somebody would hang a diagnosis on it and I would be forced down a road of treatment. Presumably to him, letting it run riot over my body would be better than getting the diagnosis and treatment I have had which has meant I could continue on long walks when possible!

I think GPs sometimes fail to cope with their own limited ability to diagnose, they do a great role in the generalist category but for specialist problems we need specialist care. I'm a researcher and one of the most interesting conclusions I can draw is 'I don't know the answer, we need to find out more' the medical profession seems to have the exact opposite view and always want to be able to say they know so when they don't know, they like to instead fob you off or tell you you are insane etc etc...I know that doesn't apply across the board but more than once I've come up against medics who don't want to go further because they know they do not have an answer and some form of arrogance or fear means they cannot admit that. I might be wrong but that is how my experience has played out.

PowerOn

Thank you I will be interested in the test.
Completely agree with your view of GPs except for one who I think may have over heard me giving off one day, I went in and during the appointment he started typing a reffral letter for my son to a specialist department repeating my phrase which I had said loudly in the waiting room, I am writting for an appointment for this child as you are a "Specialist who knows what you are doing whereas I am nothing but a GENERAL doctor"
Did not know where to look!
Some GPs have a sense of humour thank goodness, in fact that one once wrote a letter of apology to me for the way he had treated my young daughter, she being very tall looked a lot older then she was at the time and he was very short tempered towards her, later he saw us outside for a walk and did a double take when he saw her primary school uniform.
Should have kept and framed the letter but I returned it to him and said that was ok and the letter was appreicated but I was returning it incase he ever worried about a complaint.

Soretoe2

Hi, I'm really sorry to hear that you have had your hopes dashed with regard to getting a disgnosis for your problems. it's a difficult one pinpointing what exactly is causing the pain and weakness sometimes. However I do think that getting help for the symptoms we have is very important, whether we have a diagnosis or not.
You mention the burning pain. As a rule burning type pain is associated with nerve damage or irritation of some kind. This can be because of arthritis, injury or illness.
Neuropathic pain is hard to treat. There are anti-convulsive medications such as Pregabalin/Gabapentin, anti-depressants at a low dose such as amitryptyline and others. They all have significant side effects that can affect our everyday lives. Personally my brain wouldn't work on them.
You can ask to be reffered to a Pain Clinic or Neuropathy department to see if you have neuropathic pain. Unfortunately the bottom line is that there is not much out there for dealing with it. Sometimes surgery can help, sometimes surgery makes it worse.
I don't mean to sound negative, it is just the way it is.
Most long term pain sufferers try and use distraction therapy and keep going as well as they can and end up with much less help and treatment than we would really like.
The trouble is there is a defined procedure at the hospitals and once you've been round the block there's no where else to go except start again.
If you can find a good combination of medications with your doctors this will help a great deal, it can take a few months or more using trial and error before you hit on the right meds though. Don't give up keep trying.
Generally exercise is good to keep going but don't overdo it and push yourself too far.
Keep plugging away at the docs, as no one will help us if we don't do a certain amount ourselves.
Good luck, I look forward to hearing how you are doing.. Joy

PowerOn

Thank you Joy.
I am going to keep plugging for real answers not fobbed off ones that I have been getting for instance the 1st podiatrist telling me there was nothing wrong with my toe/foot/legs so I went away feeling silly for 2 years until I could not stand the pain any longer and went back for a second opinion, the 2nd Pod looked at my legs and within a minute said , "I think I know what is wrong" a few excersices later he had said I have Rear Foot Varus a pre birth condition and needed insoles in my shoes, they worked a treat but as I have been walking miles for nearly 50 years (as advised by GPs as well as for fun) I had done major damage to my joints.
Except that does not explain my hands and neck.
You would have thought the 1st pod would have wondered why my big toe would not bend instead she insisted "some people are just born like that" due to the RVF even with my milage I have extremely weak leg muscles which shocked me, but the 2nd Pod get me to do excersices and I could not do them, when I got home I asked my children to do them and they thought they were not even any effort of any kind!
I booked an appointment yesterday with GP the next available is 7 Nov so am not expecting any quick answers.

PowerOn

Now my knees are freezing and I could do with a hot water bottle, this illness is freaky.

Soretoe2

You are very welcome, as you can tell from my username I have lots of foot problems and can really sympathise with your poor tootsies.
I have had four operations on mine over a 30 years period. To be honest the pain is the same. Drives me mad.
I have also had good and bad opinions over the years about different parts of me. I have been told a lot of rubbish in my time as well. I now don't believe anything unless it make sense to me, the sufferer.
You mention your hand/neck. Our whole bodies are connected by neuro pathways. It is very possible that your neck pain is from stenosis/disc wear and tear or similar in your cervical spine. If this is the case then your hands will have reffered pain down the nerves from your cervical spine. When you add a bit of arthritis it becomes a nasty, painful condition to live with.
It is estimated that most of us will end up with back/neck/arm problems simply from a lifetimes use of our bodies. In some it is mild and in others it is a real problem.
An MRI scan would prove conclusively what the problem is. The treatment, if you get that far is very hit and miss I'm afraid. Most of us just learn to live with it all, with the help of heat/ice/ meds that we find helpful.
You could try asking to go to a Pain Clinic, they are also hit and miss but may request an MRI scan for you. This would be helpful.
Well, keep on plugging away, good luck with your next appointment, hope you get some answers and feel a bit better soon. Joy

ShulaArcher

Hello

Have read through all these messages and send my sympathy to you. The scan which was mentioned would be an ultrasound, judging by the description.

I only found out very recently that our treatment is supposed to be "patient led" now. I had been wondering why GPs said, "What do you want me to do?" or "What do you think?" when I'd gone to consult them. They should be offering you a range of possibilities (if there is a range), summarising any pros and cons and then letting you decide what to do next. Don't give up!

I don't think it's wise to do our own diagnosis BUT has anybody ever ruled out fibromyalgia for you? This typically gives a burning pain. Just a thought!

Best wishes, Shula

PowerOn

Hi Soretoe2
Sorry to hear you have had so many ops, once you have been in hospital and seen all the mistakes you kinda lose hope, that has been my experience of medical blunders )
(not arthur related or auto immune all digestion, most of intestines removed)
I know from x rays I have spondylosis of the lower back and neck with oestrophytes but the GP insisted those are normal and everyone has them and says it in a way to dismiss any complaint as my being a fool, hence me not going back to her, she is very rude.
On the above grounds i have been refused an mri as it is "totally unnecessary"
I am now with a different GP who seems to be taking action hence the blood tests.
The pain clinic may be worth looking.
ShulaArcher yes it does sound like an ultrascan I wonder if those are cheaper then mri so there may be more chance of getting that.
Isn't it a pity GPs do not explain things to people, saying what options are open to a person and asking what they would prefer sounds so much better then, "so, what do you want me to do" that totally throws me when they do that, sound like a sulky child.
One GP said to me I have fibro but wrote on my notes "seems to have a fibro related type problem" that was on the ref to the POd clinic which the pains then were later found to be caused by the RFV but I do have other symptoms that fit Fibro, would that have shown up in any of the blood tests above or is it seperate.
Must learn to write shorter posts!

ShulaArcher

Hi again

Fibromyalgia can't be diagnosed from blood tests, unfortunately. This is a quote from the info my Rheumatologist gave me: "Fibromyalgia is a name for widespread pain affecting the muscles but not the joints. It is a chronic condition, but it is not life threatening or progressive and does not cause permanent damage to muscles bones or joints. There are usually no outward signs of the condition and people with fibromyalgia often look well but feel awful."

About the ultrasound and MRI - they are used to show different things, so it's up to the GP or Consultant to decide which is the best for you.

Hope it all works out for you before too long.

Shula

PowerOn

Thank you Shula this is more complicated then any detective series on a TV drama, maybe the TV peeps are missing a trick!
I am going to keep going to the GP until something is sorted, this many symptoms and this much pain espically the weird burning has to have a cause.
I had quite a good weekend, just the knees keep burning now and again and other random pains, thank goodness I did the Pilates excerises to reduce the Lower back pain and siciatic pain=that worked a treat, nearly a miracle.

ELAINE55555

Just as a matter of interest to anyone, I get an ultrasound scan every time I go to the ruemmy. I thought everyone got one during their appointments. The inflammation does indeed show up on the screen like a fire.

dreamdaisy

There is no doubt that exercise can be beneficial for us but we have to find the point where it moves from beneficial to aggravating what we have. I can walk further and for longer with my rollator (I can walk and rest for up to two hours) than with the crutches (twenty minutes tops) but the 'payback' from the rollator is worse because I do tend to overdo things as it's superficially easier.

I have an auto-immune arthritis and the joint damage from that has led to OA in my knees and ankles. The pains are very different from one to the other, the OA one is indeed like a burning sensation. It's horrid, the dullers remove the hotter aspects but it's rest that eases it albeit briefly. Don't push yourself too hard, PowerOn, but do keep up the good work. DD

PowerOn

Hi ELAINE55555 I have not been to see anyone except GPs and had a few x-rays which showed spondylosis in back and neck with oestrophyte in neck which is noticable when I swallow.
I am being told by GP these things are normal and not to worry, well I let it go at that for a while and has not done me any good.
Am waiting for a GP app which is approx 4 weeks waiting time and also to see ENT again about throat oestrophyte.
There are going to be no quick answers with that waiting list.
Does the inflammation show up even when there is no feeling of heat in the joints?
DD I agree excerise is good but just enough to get muscles working but not to over do it, although the knee burning happens even after I have been very lazy for a few days and makes no difference if I sit with knees bent or straight, I have tried both to see if one is better then the other but seems to make no difference.
Another thing I have learned is what not to do, for example bend too often or for more then a few mins in any one position, never carry shopping, even 2 litres of milk sets my back off.
Will just have to be patient until my GP or ENT appointment for more information.