Any Advice

[Charlie50]

Hypermobility Ehlers Danlos Syndrome (hEDS), I seem to be struggling with it at the moment GP just keeps saying about upping my pain relief. I have Osteoporosis of the spine & Osteopenia in my hips, TMJ problems, awful Menopause (unable to tolerate any HRT or Over the Counter meds), Gut Dysmotility, IBS & now GP thinks I have Benign paroxysmal positional vertigo (BPPV), waiting on appt at specialist NHS clinic... Feel I am ceasing up....

[karmel]

I have HEDS too, and my last gp refused to accept I was hypermobile. Even though she had referred me to two specialists who said my hypermobile joints were unsuitable for surgery because any surgery wouldn't be successful. It took years for the gp to refer me to a rheumy and once she had I changed doctors. I also have osteoporosis and osteopenia and am on bisphosphonates. All this stress and having to take bisphosphonate has caused my dry eyes (do you have problems with EDS related eye problems?) to be worse and my IBS to flare-up even though I take a bucket load of supplements. I know exactly how you feel - I think when your immune system is low you seem to just get more health conditions.

[Charlie50 in reply to karmel]

Welcome to the club.... Yes my eyes are very dry & always feel if I have a hair or eyelash in them - off for eye check up next week.... I have tried Zoledronic Acid Infusion (unable to tolerate tablets) & had awful reaction & now have IBS so I am currently not having any treatment for my OP & Rheumatology have gone very quiet.... Thank you for answering it does help..... I had a terrific supportive GP until we moved so it is like going back to the beginning & I'm fed up with going over my condition... Anyway it is what it is at the moment..

[strongmouse]

It is hard when you have more than one illness, more than that an accumulation! Unfortunately many GPs are generalists and like looking at one symptom at a time, but our bodies don't work like that...

Although I don't have EDS my son does so I know a little about it plus over the years my own health seems to be that you as you age you get one illness then another and another.

Rather than thinking about all the different illnesses try to see what you need to do most to manage. Would physiotherapy help? If so find an experienced physio as near to you as possible. Or an Occupational Therapist to help you day to day. Take a look at the EDS website and maybe phone there helpline to see if they can help in anyway. I have heard some people find a chiropractioner helpful, but they are only available privately and likewise acupuncture.

Good that you have an appointment at specialist clinic. Hope you don't have to wait too long.

[Charlie50 in reply to strongmouse]

I have a physio & she has been great so long it may continue.... The waiting list apparently is a year plus so fingers crossed.... OT is a thought so may ask my Physio initially...Thank you for the suggestion... Yes my GP actually said about being a generalist & felt that I was asking a lot of them to try & assist, was told to lower my expectations of health & to think about Disability Benefit etc. I guess everyone in the nhs is at capacity, I am only 55yrs...Thank you for you reply.

[strongmouse in reply to Charlie50]

It is always hard to have to think about long term Disabiliyt Benefits. I had to take early retirement due to ill health. If you do have to go down the benefits route then get advice as the forms and requirements are quite specific, and you will need to discover how to fit your illness into a compter tick box system! I burst into tears when I had to go on benefits, but unfortunately my health had detirorated and I didn't come back up as I had before. (I found the Citizens Advice web site helpful).

Having said that I had in the past returned to work and so it is possible. Work with your body, your illness. Be as informed as you can and try to manage as best as you can without jeopardising your long term health. Yes the NHS is under strain and unfortunately some disciplines are underfunded. You could try phoning the appointments department to see if they have a cancellation. It does work sometimes.

All the best.

[Charlie50 in reply to strongmouse]

Thank you that has helped....

[mandynelson50]

Yes to all of the above, but with gut dysmotility i now have Barrets oesophagus which was discovered when i ended up going privately about my stomach symptoms, bending over and my stomach sometimes emptying into my mouth, and constant pain which on OGD found two large ulcers, a hiatus hernia and the barrets. I couldnt tolerate any of the Bisphosphonates orally so am on the annual infusion, also not allowed to take an anti-inflammatory. GP throwing co-codamol at me like they are smarties, which causes me to be constipated if i take too many therefore flaring up the IBS, had tramadol and other morphine based drugs, but i dont want to take them as have no life and just eat sleep work repeat on them. Wonder would WD40 help i have started CBD oil however the one with all the good stuff taken out but am getting a bit of relief. Sorry for making your rant about me ..

[strongmouse in reply to mandynelson50]

I feel for you. With regard to the codeine type medication, if you do need to take them then 'movicol' is quite helpful at preventing constipation. I take one packet every two days and find it works. Have you considered whether you may have some allergies? I found out that I developed an ulcer (and don't have helicobacter) after taking food which I was allergic to. Cut out the food and no ulcer, although I do still have gastric issues from time to time.

I like the WD40 idea, but as I am quite short and my husband is ober 6feet tall he thinks I should try babybio!

[Charlie50 in reply to mandynelson50]

Ranting helps stops in being all internalised... Yes I keep being told to up my pain relief which is morphine based & I refuse then I get told I'm being to hard on myself & being unreasonable... Like others are saying have you tried something to assist you with your bowels it is hard... I have to take a laxative (paediatric strength - due to my gut not tolerating others then a suppository in the evening - oh the fun I have hee hee) plus I drink warm lemon, ginger during the day also my Gastro Specialist taught me how to make natural drinks using veg & fruit as I can't seem to digest green veg or fruit without pain etc... no nice...!! My hubby has a lovely saying 'rub me out & draw me again' it makes me smile & humour is at times what gets me through - though as I'm sure all will know it doesn't always work..... But WD 40 well that does sound good....