Upper back pain

Hello Shebob

It's good to hear from you again but not to hear your very sad news of both your son and your brother - what a stressful time for you, Shebob, and my heart goes out to you. I'm so glad that you are having help with looking after your husband and I do hope he is not in too much pain. Of course all the unavoidable stress is bound to be aggravating both your urticaria and your pain.

I did have pain between my shoulder blades last year to the extent that I couldn't sit with my back against a chair back for any length of time. A physio found knots in the muscles and did lots of gentle massage and heat therapy and the pain resolved. As for rib pain, I did have that in the early days of PMR - it would come and go over a period of several months and then spontaneously resolved.

If it were me, I would ask for an X-ray, especially as you have been on steroids for PMR. It could perhaps be a simple strain or something that could be helped by either medication or physio.

I do hope you've got some good family and friends around you at this difficult time but do keep in touch and let us know how you get on.

Love and very best wishes,

MrsO

Shebob - of course we remember you and I'm so sorry to hear of your annus horribilis. It makes my version 18 years ago pale into insignificance in comparison and I cannot imagine how you are dealing with it - except for the fact that we have to don't we?

Yes - your description of the back and shoulder pain is identical to what I had to some extent all the time I had PMR before it was diagnosed and I was given pred. I had put it down to back problems and had had physio and used other therapies to keep me upright - Bowen therapy and Pilates helped a lot but it never really went away. It surfaced to a severe extent when the PMR hit like a ton of bricks two and a half years ago which was what eventually led to a diagnosis.

Once I started on pred it resolved to a great extent, only returning if I overdid the arm movement by trying to do too much window cleaning or other things requiring similar arm movements - brushing and vacuuming floors and so on. I had a permanent tingling between my shoulder blades unless I was sitting in a supportive arm chair and sitting on anything without a back for more than a few minutes was impossible. After a year or so on pred it had improved to a stage where it didn't really bother me but it returned a bit with reducing dose.

Over all the forums I follow there have been posts from a few people with PMR who find what I think is the only COX inhibitor left on the market has helped with pain relief - it is used in arthritis. Might a trial of that be worth discussing with your doctor if pred is really absolutely out of the question? I'm hardly surprised your urticaria and PMR are so bad given the stress you've been under for so long now but there is very little comfort to offer you. I remember the cottonwool brain I had when my husband had cancer that was thought for a while to be incurable as it was so advanced it was way beyond anything seen before where the patient had survived. He did but that 6 months is something I wouldn't want even my worst emeny to go through - all I can say is \"hugs\" and I wish there were something practical I could offer or do.

Eileen

Thanks so much Mrs O and Eileen for your replies. It does help to have someone to turn to. I`m seriously thinking of going back onto 5mg of pred just to see if it eases things. My doctor isn`t a great one for suggestions. She did eventually refer me to a Dermatologist privately.

We would undergo an hour`s drive just to be told \"try this very latest antihistamine, see you in 6 weeks\" And each time we went we got 2 minutes with him and told to increase the tabs. He could have done that over the phone. Anyway after weeks on 6 Rupatadine a day with no relief. So I rang to say I wouldn`t be seeing him again.

Apart from the travel and expense I was getting nowhere.

Incidentally he`s a professor and head of Derm at my NHS hospital. A brilliant academic but no doctor.

So I went to my doc and said that having had this a year and tried every antihistamine known to man- wasn`t it time to have skin tests. So I`m to see an NHS Derm on Thursday. Keep your fingers crossed for me ! Shebob x

Shebob

I have not forgotten you either and like Eileen and MrsO am so sorry to hear of all your sad news.

Out of nothing, I am wondering if any of the tablets you are taking, have dye on them ? Sometimes the dye can cause an allergic re-action. If they have dye on them, try washing it off.

If I remember correctly, someone on this site had severe skin problems and it turned out it was Lyme's Disease. But I really cannot remember it all clearly.

I do so hope the NHS Derm can helpNot only my fingers, but knees, eyes and toes crossed.

Hello again Shebob

I do hope the dermotologist comes up with something especially after the runaround you have had. I had many years of hospital visits with an ear problem that used to ooze and itch right down to my boots and was plied with no end of different antibiotic drops (it was considered to have been an acquired infection from a simple trip to the GP who syringed a blocked ear!). Finally I sought the advice of a private ENT man who after teating and packing my ear and discovering that even that didn't work , referred me to a Consultant Dermatologist. Patch tests were done of everyday substances plus I had to try and remember which antibiotic drops had been used over the years from a list that his nurse read out! After 48 hours I had to go back to have the patches removed and checked - nothing was found. However, 24 hours later, 2 very large itchy wheals appeared on my back and an immediate return to the Dermatologist revealed that I was highly allergic to a substance called Neomycin in many of ear drops I had used, so the problem was never ever going to get better. Unfortunately the drops had worn skin away to the bone inside the ear and I now have to have microsuction carried out at least once a year to stop the bone eroding! I'm sorry this is probably a boring story to you but it just highlights the need for so-called experts to investigate further when such infections do not clear up rather than just plying us with unnecessary and damaging drugs.

I, too, have absolutely everything crossed for you that you can at least get this horrid problem under control.

MrsO

Thanks Mrs O and Mrs K,

Don`t think it can be any of my medications as I came off them for 2 weeks just to see. The only one I continued to take was Nifedipine for blood pressure and though I told my Doc that it had itching listed as a side effect, (something she didn`t know), she wouldn`t change it because I`ve been on it for years.

Would have thought with what I was paying the private dermatologist, that he would have done patch tests. I`ve bought every cream on the market and use E45 bath oil but zilch to them all ! Shebob x

So very sorry to hear of your losses and I feel that the current stress you have may be responsible for some of your problems.

Perhaps a return to a small dose of steroids would help? It might be something worth considering in the short term.

Do hope you begin to feel better able to cope; you are obviously a caring person, but you do need to look after yourself as well. Have you tried a simple emollient cream?

Nefret

Hi Nefret,

I would have blamed the present stress except all this began before my son was diagnosed in May last year and he died in February.

Certainly the extra running about and lifting doesn`t help.

Re creams I`ve tried Canesten, Eurax,Teatree, E45 cream, E45 lotion, E45 Itch relief,Lanacane powder,Bio-Oil, Baby oil,Sudafed and Urtica Urens tabs from a homeopath. Know any good witchdoctors ?

Shebob x

PS Also went for Reflexology which worked wonders for restless legs but not the itch.

Um, just a real stab in the dark shebob - but there is an autoimmune vasculitis which manifests as a severe urticaria. Do the lesions leave bruise-like marks?

As we know, one autoimmune disease can be friends with another and it is found along with lupus - why not with PMR? It's difficult to treat (where have we heard that before) but there are other drugs besides corticosteroids that sometimes work. I think it needs a skin biopsy to confirm. I found some reasonable info by googling \"urticarial vasculitis mayo clinic\" - got pictures too! Does yours bear any resemblance to them?

I had some funny skin lesions at one point that I queried as being possibly a relation of coeliac disease (I was very allergic to wheat but it seems to have reduced with steroids) but the dermatologist I saw was only interested in possible skin cancer cases judging by the very sarky comments she made and I disscussed it with a gut specialist and he said if you can control the symptoms by diet - don't worry about it! So I didn't! But it didn't increase my faith in dermatologists too much. Dapsone is used in that version of coeliac disease for the people who can't deal with a gluten-free diet. I gather it will reduce quite severe itches - maybe worth a query to your GP?

Gentle hugs (so as not to make you itch more!)

Eileen

Hello shebob and sending you some virtual hugs for what you have been through and are currently going through.........

Has Lichen Planus been ruled out re your 'rash'........ only ask as I have Oral Lichen Planus ( another disease of the auto-immune system) and am aware it also affects skin and genital areas as well as, more rarely, tear ducts and ears although many medics will dispute this! One of my friends has this plus the tear duct version......

If you 'Google' Lichen Planus you should also see photos of the skin rashes/lesions and this might verify it for you....... just a thought?

Shebob, So sad for you. . Like Mrs.O do hope you have loving support at this very difficult time.It is no wonder that you have pains. The stress and tension would affect anyone but with PMR to cope with, too, is very hard.

Can only say I will think of you and wish you some peace further along the line.

Hello All,

Just thought I`d let you know how my visit to the new Dermatologist went. She was very nice and listened to me. She said that if none of the antihistamines I`d tried in the past had helped then it wasn`t ideopathic Urticaria. I told her that one night, well 2am actually, I`d been so desperate that I`d taken a Gabapentin, prescribed for me once for peripheral neuropathy when I was in hospital with yet another bout of pneumonia due to my emphysema. Though it didn`t take it away, it alleviated it a little. So she looked it up and said it wasn`t usually used for itching. She said she needed to consult with a physician and my neurologist ( I see him for injections in the occipital nerve in the back of my head.)

True to her word, the next morning I had a call from my doctor saying that Dr Crawford ( the Derm ) had been in touch and I was to take 2 Gabapentin 3 times a day, though my doc warned me to increase very gradually as it can cause dizziness. I can`t afford to have that when I`m dishing out morphine to John. Love to you all, Shebob x

Im afraid all I can offer you is sympathy Shebob

You have had so many other things in your life to cope with its not surprising your health is suffering I know nothing about the drug you are taking but it possibly works on the nerve endings and helps with the itching

Im also sorry to hear that you have more sadness to come with your husbands health failng Life can be very unfair to a few people sometimes and it appears at the moment it is you

Very best wishes and I hope you have people supporting you at this dreadful time

Mrs G

Hello Shebob

It's a shame that the dermatologist hasn't been able to come up with either further investigation for the rash or any positive treatment.

As you are under so much unavoidable stress at the moment, I wonder if treatment from an alternative therapist such as a massage therapist would help to at least relax you whilst you are going through this difficult time. It might also help with your back pain.

I know you have tried many preparations for your rash but wonder if you have tried any of the Calendular or Graphites creams (by Nelsons from the Health Foods shop)? I bought some Hypercal cream for my son when he had a long-standing rash on the inside of an elbow and it cured it.

Take care, Shebob, and a big hug. :hug: