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Hi

Postby Motorvating » Tue May 31, 2016 8:19 pm

After 53 years of good health, this year smashed that happy record as I became terribly ill in March. My doctor thought I was a hypochondriac when I had repeated visits to the doctor with all kinds of weird and wonderful ailments. Well after the NHS referred me to a consultant which would have been September I decided use my Benenden membership and got to see a consultant two days later. Was diagnosed with Fibromyalgia and chronic spontaneous Urticaria/Angioedema.

I can manage the second ailment somewhat, but the FMS is something else. don't get the pain as some do, not yet anyway, but rather a general feeling of ill health almost flu like muscle aches.The chronic fatigue is what gets me after physical activity, a few hours in the garden knocks me out for 24 hrs, and for somebody who was always up the gym and boxed for many years,I find this particularly difficult to deal with. I seem to suffer nearly all the other symptoms randomly, and sometimes for a few hrs???? bizarre things like all of a sudden a feeling of real pain in a joint, or tooth or even the soles of my feet which makes walking uncomfortable.

After diagnosis and educating myself about the condition, I realise I have had this coming on for a number of years but put the symptoms down to other causes or just thought that was life, that's how everybody feels, even had operations on my nose for sinus problems that was almost certainly down to FMS.

Anyway that's the end of my story, you all know it because you have it already:)
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Re: Hi

Postby *Lisa* » Thu Jun 02, 2016 10:44 am

:welcome:

I also have been diagnosed with Urticaria/Angioedema and awaiting to see a consultant at the specialist allergy clinic in Addenbrookes Cambridge.

I don't come across many with both (2). Reason why I say this is because I strongly feel that the Urticaria/Angioedema exacerbates symptoms.

You can feel *flu like* and have joint pains with the hives as well because of the amount of histamine In the body. Im unsure to if both illnesses are related (FM & Hives) I will ask when I see the consultant.

Also can I ask... Have you been tested for auto-immune diseases (ANA/ANCA bloods?) I say this because the urticarial & angioedema can be linked there.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Hi

Postby Motorvating » Thu Jun 02, 2016 6:22 pm

Hi,

I would tend to agree, each time I have an attack of FM I get a heads up its coming due to the prevailing hives and swellings from urticaria and angioedema, which have been life threatening due to my throat swelling up as well as other appendages.

Not sure if I was tested for auto immune disease because I had so many tests in such a short period of time, I didn't know if I was coming or going. I will ask the next tome I visit the doctor.
Motorvating
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Re: Hi

Postby *Lisa* » Thu Jun 02, 2016 7:16 pm

Yes it can be very life threatening, the worst I have experienced is my nasal airways shutting off/blocking literally within seconds :shock: that was caused by fear as I was being rushed to hospital from problems with my gallbladder at the time. I couldn't breathe and my whole upper body went red raw and burning, was in severe pain from gallbladder then faced with the onset of the angioedema :-o

My swelling are mainly in the mornings, each morning my face swells. My hives are triggered by mainly pressure, then hormones, change in tempreture & some meds.

Its the unpredicted side of it. My daughter also has FM/CFS and past few years hives & swellings meaning possible hereditary or auto-immune related.

My ANCA level is slightly positive meaning I have low white blood cells and my inflammation levels slightly high.

ATM I have been diagnosed as chronic hives & angioedema but things since then have gotten worse and im reacting to more things plus daughter now diagnosed so looks like I will be tested more thoroughly to see if a connection.

I also find it gets agrivated by my fatigue levels but then its hard to recognise whats causing what lol :crazy:

Just nice to chat with some one with both as been suffering a long ole time now with no one who has same.

My appointment is in a few weeks so if your around i'll message you with any outcome that may be of help to you like an FM connection etc....

Oh on a last note :crazy: because its so unpredictable and we have high histamine in the body Im now very cautious on things like new foods/stinging nettles & bees/wasps :-| anything that may put more histamine in the body :-? im even cautious about swimming? cause apparently if you react to tempreture then going from a cold pool and warming up afterwards can trigger reaction :crazy: that's just for that let alone the triggers for fibro pain etc :sleep:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Hi

Postby Motorvating » Thu Jun 02, 2016 8:37 pm

I just cant figure out the triggers for the Urticaria/Angioedema, it just seems so random, however like you I do feel the two are related because they are always bed fellows.

The hives can be ghastly, some will itch, some will burn whilst others give no sensation. If I rub or scratch them they react badly becoming inflamed and risen. the itching can be so bad I can scratch till I bleed. When my hands and feet swell it feels like my blood is overheating.

My consultant has prescribed 40 mgs of Cetirizine (antihistamine) per day and 1000 mg of Tranexamic acid per day for six months without a flare, then withdraw from medication in the hope it has gone away. Trouble is I have repeated flares.
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Re: Hi

Postby Motorvating » Mon Oct 03, 2016 8:04 pm

Hi Lisa, what happened at your appointment in June?
Motorvating
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Re: Hi

Postby *Lisa* » Tue Oct 04, 2016 10:37 am

:wave:

Hiya

I saw this lovely lady who was very experienced.

I was in the appointment for at least an hour so had a good thorough investigation.

Went through my medical history and general life. Went through previous bloods, pics of hives. Looked at hives on me at time etc...

Felt she knew me more then me after :lol:

Think it was the most any doctor had looked into me and asked about everything!

So, i had the allergy skin test. think 14 in all which covered everything from pets to food to enviroment.

I only reacted to grass pollen. Thus meaning my hives were not reacting from an allergy.

This result added to my history and symptoms etc... she felt strongly that i had an autoimmune disease. :shock: so i had 46 blood test done :yikes: :yikes: :yikes: :yikes: :yikes:

My inflammation markers were up plus some white blood cells and a confirmation of a positive ANCA suggesting that her thoughts maybe true.

So i am waiting to see a specialist in autoimmune diseases at Addenbrookes in a few weeks.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Hi

Postby Motorvating » Mon Oct 24, 2016 9:06 pm

The specialist advised me I had to take antihistamine twice a day for six months in the hope it would damp the condition down, but unfortunately as soon as I stop taking it the condition flares up. things have changed somewhat from the initial problems I had in April. I usually wake up with little red lumps on my hands, wrists, chest and neck which tend to go down after taking the antihistamine. in the evening I tend to get fewer but larger hives anywhere on my body that itch and very painful to touch, and particularly on my head and back of neck, and random swellings of muscles that are particularly difficult to deal with. Also notice any injury I suffer results in huge over reaction from my body.

I need to progress this further with my doctor, but don't know how. Like all UK medical practices they are overwhelmed by numbers off patients so unlikely to get any quality time with the Doc, and I don't think they know what to do. Do you have any suggestions on how to push this forward?
Motorvating
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Re: Hi

Postby *Lisa* » Tue Oct 25, 2016 10:14 am

Hi, funny you should reply as i saw the consultant yesterday and she gave me some more info on treating the hive symptoms.

The consultants i have been seeing are the best you can get. Both work in Addenbrookes Hospital as well as London Clinics etc....

Now i have been told that a combination of .... fexofenadine / citrizine / montelukast & renitidine help symptoms.

Thats all OK but where / why are symptoms breaking out?

So the other solution is also to find the cause.

The GP will refer you first on to a skin specialist or dermatologist. They will run the blood tests and work out treatment plan.

If they feel its autoimmune related the you get refered to the Rhuemi.

Some cases its Idiopathic (not a clue why) and in rare cases Hereditory.

I would suggest that to get seen asap to explain how symptoms are effecting your every day life and how frequeant attacks are PLUS photograph as much as you can to show as evidance as you can guarentee by time you get to see someone theres nothing! :roll: :lol:

Remember also to mention about throat swells!

:goodluck1:

BTW (Update) Consultant yesterday (Rhuemi) just asked loads of questions, done examinations and re done some blood work so i am no further forward in knowing anything :roll: i guess these things take time and caution plus lots of pieces of the puzzle to fit together. Not an easy job :idea: will get some sort of an idea once bloods have been done (again) and the consultants write up.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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