Continuing pain.

[frog]

Hi, I have been in severe pain for almost 4 months, my GP has sent me to Physio, which took nearly 3 months to get seen, But the Physio seems to have aggravated my condition. I have, Lupus, Bursitis, sciatica, arthritis, hip wear and tear, raynauds, and syjgrens. I take steroids hydroxychloriquine, and other meds.

My Gp can't tell me which condition is causing so much pain, and I am at a loss, I have reduced my days at work, and still have hydro therapy to come, I see my specialist in September, and can not bring the appt forward.

I am at a loss.

I take paracetamol. Diclofenic , ibrobufen gel, all on top of regular meds, surely the GP should be able to do more, than to say strengthen your inner core, exercise, loose weight.

As I am sure you are all aware, if you can't exercise it is hard to loose weight, and I am getting very upset, angry, frustrated, and this is just not me.

I am usually positive, happy and cope well.

BUT

PLEASE any help would be gratefully received.

Just to know which condition is the major cause, would possibly help me cope,as my GP seems adamant it is not the lupus,

Thank you for reading my rant,

Sandy

[hells23]

You sound like me. Don't know what illness is causing which pain. I get steroid injections in my hips for bursitis. They help but need doing every 3 months. x

[angelharley]

I've not been diagnosed but find similar findings of what I've been going through these past couple of years. I have Bursitis that waxes and wanes in my hips, ankles, knees, knuckles, even in muscle.arm and top of thigh,also tendonitis in wrist. I had a ANA positive 1;80 with nucleolar pattern when I started to feel pain, positive TPO ABS ( I have Hashimoto's) and gastric Parietal Cells (Also have Diverticulitis. GP last week was going to give me steroid injection in both hips but decided to take blood for full antibodies and referring me to a Rhuemy. Another symptom apart from a list as long as my arm LOL is sweating day and night like I'm overheating, no temperature though and really bad headaches that don't go with pain killers.

Bursitis is so painful in both hips, much sympathy to you, really difficult to get comfortable at night, tossing and turning all night long xx

[misty14]

Hi Frog

Sorry to read of your severe pain struggles which I can totally sympathise with and know too it can affect our mood badly!.

You have 4 horrible reasons for having such pain apart from the Lupus and I'm wondering if you've been offered steroid injections for bursitis and sciatica?. I've had bursitis in both hips and they responded well. I had them done by Orthapaedic Specialists who could also look at your back as you have sciatica which is another very painful condition!.Maybe a referral to them would be good or alternatively one to a Pain Clinic as they have access to different treatments. I'm being helped by one for a right leg problem I've got causing sciatica!. Talk to your GP about it, best of luck

[frog in reply to misty14]

Thank you for your reply, I have had the steroid injections, my specialist advised my GP practice to provide them if I needed.

Funny thing was two GPs in the practice were not sure how to administer it.

So the fun goes on.

Hope you are doing well with your treatment,

Take care, Sandy

[misty14 in reply to frog]

Hi Frog

You've had some interesting replies. At the moment I'm waiting for another steroid injection in my back and because I'm in a lot of pain I'm trying Chiropractic. It's gentler than Osteopathy and aims to treat the nervous system!. I can also vouch for eating less to aid losing weight. We need less food as we're not so active and it does work given time. I hope you get help for your pain soonX

[kyliesinead]

Hi frog

When I started to have hip and knee problems I made a conscious decision to lose weight. Obviously I couldn't do this by exercise so I tweaked my diet reasoning that if I wasn't doing as much physically, then I didn't need as much fuel. It has worked. Hope this helps.

[Kate-L]

I can fully sympathise with your pain Sandy, I used to suffer really badly with pain, mainly in my joints. I did try everything that my doctors recommended but nothing worked.

With the pain getting worse and my joints becoming even more red and swollen, in desperation, I went to see a Chinese Acupuncturist.

I didn't know what to expect but he was truly wonderful and after a short series of acupuncture sessions, my pain started to decrease and over a period of three months it disappeared completely and has never returned.

Unfortunately he could do nothing for my Lupus, but he made a huge difference to my life and my ability to cope with everything that followed. This was a few years ago now, but if you find you have tried everything and nothing has helped your pain then try Acupuncture, it's more mainstream now and I think even your GP can recommend you to a practitioner.

I do hope you feel better very soon.

Katie

[Barnclown]

You've got some great replies, so I'll try to be brief:

My pain consultant helped reduce my version of similar sorts of chronic pain symptoms via permanent joint denervations with IMS rehabilitation by a qualified physio. IMS can only be practiced by trained & qualified medical professionals (usually physios & GPs). It is so effective, that I'd recommend trying it on its own: you'll find details if you google Intra Muscular Stimulation...it's an extra deep type of dry needling (MUCH DEEPER than traditional Chinese acupuncture etc) developed for chronic denatured soft tissues....which, as I understand it, is EXACTLY what SLE gives us (i.e. Tightened, denatured tendon, ligaments & muscles which put extra strain on our joints, leading to bursitis, synovitis, capsulitis etc etc)

I feel I can be confident in recommending IMS, because while I coped with my decades of excruciating joint & soft tissue pain, I invested a lot of cash in conscientiously trying out just about every type of therapy under the sun including traditional acupuncture (while the nhs just prescribed NSAIDs & analgesics which did little more than turn me into a zombie) AND nothing worked as effectively as IMS combined with gentle repetitive stretching exercises. (NB The joint denervations I had were necessary due to other causes less related to my unrecognised infant onset SLE)

Anyway, think about it. And take care...am v much feeling for you!

XO

PS if there is anything else that REALLY helped me, it's the Alexander Technique's gentle subtle postural realignment....

[Whathappned]

After reading what Barnclown said re IMS, which appears a very good suggestion, I was wondering if you had heard of Bowen technique. This is a non invasive method of rolling movements over specific muscles and tendons and its supposed to balance the autonomic nervous system. I had a few sessions as my yoga teacher at the time was training to do it. She looked at me struggling and suggested it may help as well as the stretching in yoga. They did give relief and combined with the yoga I was moving better but they didn't last long as my muscles etc eventually went back to their wrong position, which according to her wasn't supposed to happen. At the time though my diagnosis was CFS/ME and not connective tissue disease probably SLE, Myositis and her expectations may of been different. If you are in so much pain it might be worth trying even if its a temporary relief from it. The other problem is it costs and that was what stopped me going, initially I was a Case study and it was free.

Good Luck

[frog]

Thank you all for your replies, it is good to have people who understand what is happening.

Many thanks Sandy

[lol-lou]

Hiya,

Sorry to hear you have been in so much pain. Can I ask are there any other symptoms? (such as fatigue, insomnia, headaches?) I had been in constant pain for nearly 5 years in and out the various doctors in my surgery and was told by my doctor it was my age so put up with it! As you can imagine I left the surgery in tears thinking is this what the rest of my life is going to be like? I plucked up courage the next day to make an appointment with another doctor that day as they had just had a cancellation and when I saw this doctor I broke down in tears telling her I don't want to go on with my life etc...... She looked through my note and agreed this had been going on too long, she checked certain parts of my body which hurt like hell and I was diagnosed with fibro. I was seen within a week at the pain clinic where the consultant took notes and examined me and agreed with the diagnosis of fibro (which until then I had never heard of before).

My point is You have pain for a reason, which needs investigating. My physio discharged me when she found out what the diagnosis was. I am left to spending most of my time with hot wheat bags on my back or a TENS machine on full blast on my back which is the worse area and all that could be offered to me was the loan of a tens machine and talking therapy!

I can't take any pain relief as on MTX weekly injection so must avoid anti inbruprofen and be careful with paracetamol. I am on a lot of other meds for epilepsy, asthma,copd, depression etc .

I really feel for you as it is unacceptable in this day and age to suffer as you are doing.

I would see another doctor if possiable to see if you get any result then. Doctors are too quick to always blame lupus for every pain we suffer from.

I hope you get somewhere very soon.

Best wishes x x x x

[onamission]

I have COPD but also have budging discs in my lower back and sciatica I have radio frequency where they zap the nerve it does grow back but does help with the sciatica, I also get spine blocks for the pain in my back they last about 8 weeks.

The pain from hip could be coming from your back ask your DR to send you to the pain clinic at your local hospital pain really drags you down I hope this helps