Advice needed, desperate and at the end of my tether.

Corpsebride86

Im hoping this is in the right place, apologies if its not.

I really need some help, Im at my wits end and my doctors don’t listen to me they keep fobbing me off and I am unsure where to go to next.

Over a number of years I have suffered a number of health problems mainly with my joints. I am a larger person, I have recently begun loosing weight, I have tried every diet in the book, pills, exercise (as best I can) and nothing worked until I had an acupuncture stitch put in, since this I have lost a stone and a half! I have done this off my own back, as until recently, no doctors have mentioned my weight despite me making several requests for help. I would also like to point out that my joint problems were there long before I gained any weight.

I have seen numerous doctors for the different joint problems, and some have suggested HMS/EDS but I have never been given a firm diagnosis. My GPs attitude is oh no if you had it you would know about it.

Due to a shoulder injury, I was sent for physiotherapy and the physiotherapist I saw ran tests on me, as when she took my medical history, she asked me if anyone had mentioned the possibility of HMS/EDS, she said that I had it, but as she is not fully qualified then she cannot officially diagnose me. She said that she would need to contact my orthopaedic doctor to get him to have me diagnosed.

On her tests I tested positive with:

· Palms of the hands on floor without bending the knees.
· Bending my fingers back (little fingers go back over 90 degrees nearly to the point they touch my arm)
· My thumbs can touch my wrists.
· My feet can bend so the top of my foot is 180 degrees to my shin.
· My elbows bend backwards.
· My knees bend backwards.
· Skin can be stretched on my elbows and back of my hands.
· Swan neck fingers
· Scarring and wounds taking a long time to heal

She also noted that other symptoms within my medical history included:

· Overcrowding of teeth
· Prone to chest infections
· Soft Tissue rheumatism
· Arthralgia in my joints for longer than three months
· Little response to normal doses of anaesthetic and analgesics
· Clicking/snapping joints
· Subluxations of the joints
· Joint instability leading to frequent sprains and strains.
· Migraines


The other doctor has seen me since and he did some of the tests but was not very forth coming with any help. I have now been left alone as he won’t see me now until I loose weight; this has been in hand for a while even before he said this.

Since I have started loosing weight my symptoms have got worse. I have joined a gym and have to take things gently as with my joints being as they are I get injured easily. Even gently using exercise bikes makes my knees lock and the treadmills are a big no no.

I fell onto my knee two weeks ago and had a swelling on my calf muscle. I put up with it for a week then went to my GPs last week as the pain became unbearable to be told that I have an inter-muscle haematoma and he said looking at the report from my Physiotherapist that it looks like I do have HMS/EDS and that this wont be the only haematoma that I suffer as with possibly having HMS/EDS that I am prone to muscle tears and ligament damage.

I also queried with him as I have noticed recently since loosing weight that I am suffering a lot of heavy bruising, these bruises are coming on with no injury to the area. He just said that he did not know why these bruises are appearing and basically ushered me out of the room so he could get onto the next patient.

Until yesterday I assumed they were coming up after the gym however I haven’t been to the gym since last Monday due to my wrist being bad and on Saturday night, I had a massive one appear, it is around one and a half inches thick and a continuous band going the entire circumference around my leg. This is now really starting to worry me as they are getting bigger each time they appear.

I am in a lot of pain, my joints are really playing up and as I cannot wear the standard off the shelf splints, my mum is desperately trying to make me a splint, my original ones have long worn out, they were specially produced at a hospital that I have since been discharged from, My local Orthotics department cannot get me one alike it as they cannot produce something so elaborate.

My GP is now getting reluctant to prescribe my painkillers as over the counter ones do not work so I take stronger prescribed ones.

I don’t know who to go to, One person who has it has told me that if the Physio says yes that that is as good as a diagnosis by the rheumatologist, as at the end of the day all they will do is send me for Physio and give me the prescriptions for strong painkillers.

I have been in that much pain the past few weeks I can’t sleep, I spend at least 3 days of the week with migraines, Im really struggling but the doctors aren’t willing to help me all they do is rhyme off weight watchers spiel to me as if they earn a commission for every referal and ignore the fact I have lost a stone and a half on my own.

Can anyone advise where I should go im getting to the end of my tether.

Thanks in advance

Kirsty

snoopy89

buy the sounds of it the first thing i would be doing is looking i feel for a better doctors practice, sorry to say from what you have put. i do hope some one can give you better help though as it sure sounds like you are getting a raw deal and very little help.

borkid

Hi Kirsty regarding the unexplained bruising, are you taking NSAIDs for the pain? If so you might want to check that out. I was put on them for arthritis but one of the side effects for me was bruising as you describe. Hope you find something to help.

Corpsebride86

My main painkillers are Tramadol and Co-codamol. He has warned me that I am approaching my limit for prescriptions for them as I have been on them for four years. I keep a stock and medicate using them as needed, I try not to use the stronger ones unless absolutely neccessary.

I use diclofennac on rare occasions but as it doesnt work the last time I used it was about 6 months ago I recieved a letter telling me last week that my doctor will no longer prescribe it as it is too expensive but they will now prescribe piroxicam gel.

He told me on Friday to go and purchase Ibruprofen gel to massage into the haematoma as I cannot take Naproxen and he said the gel would work better as it is more localised. Its not had any effect on it at all

Im on a waiting list to change doctors as my local ones are not accepting any new patients atm. doctors round here are as hard to come by as dentists

Anubis_2

Hi Corpsebride, I have some advice and will PM you as I don't want to put some personal info here.

borkid

Corpsebride86 wrote: »

My main painkillers are Tramadol and Co-codamol. He has warned me that I am approaching my limit for prescriptions for them as I have been on them for four years. I keep a stock and medicate using them as needed, I try not to use the stronger ones unless absolutely neccessary.

I use diclofennac on rare occasions but as it doesnt work the last time I used it was about 6 months ago I recieved a letter telling me last week that my doctor will no longer prescribe it as it is too expensive but they will now prescribe piroxicam gel.

He told me on Friday to go and purchase Ibruprofen gel to massage into the haematoma as I cannot take Naproxen and he said the gel would work better as it is more localised. Its not had any effect on it at all

Im on a waiting list to change doctors as my local ones are not accepting any new patients atm. doctors round here are as hard to come by as dentists

As far as I am aware diclofenac, naproxen and ibruprofen are NSAIDs. Diclofenac and naproxen both caused bruising with me and I have never taken ibruprofen. My GP has now told me never to take NSAIDs again. The gel will absorb into the body and can cause side effects if it is going to. I tried dicofenac gel and it took 2 months to affect me rather than the 2 weeks taking it by mouth.
I am not a doctor but was just posting to make you aware that bruising is a side effect of some of the drugs for some people.

The only thing I have found to work is acupuncture for me it has taken all the pain away on most days and given me lots more energy. I realise that a lot of people can't afford it but maybe there is a local NHS pain clinic in your area which uses it and you could be referred to see if it will help you. I know it doesn't work for everyone and if after 6 treatments it hasn't helped then it is unlikely it will. I was told this by my GP and acupuncturist.

Good luck on your quest for pain relief.

Anubis_2

The problem with the gel (I get it prescribed every month) is that it causes thinning of the skin, so I try not to have it applied everyday. Borkid, I am unsure what your health problems are, but have they checked for SLE?

borkid

Anubis wrote: »

The problem with the gel (I get it prescribed every month) is that it causes thinning of the skin, so I try not to have it applied everyday. Borkid, I am unsure what your health problems are, but have they checked for SLE?

Hi Anubis, a couple of forms of arthritis which I have under control. Just learnt a few things on the way.

Anubis_2

borkid wrote: »

Hi Anubis, a couple of forms of arthritis which I have under control. Just learnt a few things on the way.

Just mentioned SLE (systemic lupus) as easy bruising is common and can happen as you mention - that is how easily bruising can occur in SLE.

borkid

Thanks for your concern Anubis but the bruising was a direct result of the medication, I had a lot of other side effects as well. The blood tests I had would have picked up SLE.

Anubis_2

Well yes and no. It can take many years to diagnose and is often misdiagnosed because of this. The reason is the positive ANA does not always show in patients, it has to be "caught" during the blood test at the right time. There are also false positives. It's a really awkward one to diagnose on some. However, it was just an idea